Identifying the unmet supportive care needs of men living with and beyond prostate cancer: A systematic review.

European Journal of Oncology Nursing 19 (2015) 405e418

Contents lists available at ScienceDirect

European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon

Identifying the unmet supportive care needs of men living with and beyond prostate cancer: A systematic review Catherine Paterson a, *, Allison Robertson b, Alison Smith b, Ghulam Nabi a a b

College of Medicine, Dentistry and Nursing, Medical Research Institute, School of Medicine, University of Dundee, UK National Health Service Tayside, Urology Department, Dundee, UK

a b s t r a c t Keywords: Prostate cancer Supportive care needs Quality of life Systematic review

Purpose: Men affected by prostate cancer are a patient population in need of on-going person-centred supportive care. Our aim was to synthesise current available evidence with regard to the unmet supportive care needs of men living with and beyond prostate cancer. Methods: A systematic review was conducted according to the PRISMA Statement Guidelines. Electronic databases (DARE, Cochrane MEDLINE, BNI, PsychINFO, EMBASE and CIHAHL) were searched to identify studies employing qualitative and/or quantitative methods. Methodological evaluation was conducted, and findings were integrated in a narrative synthesis. Results: 7521 references were retrieved, 17 articles met the eligibility criteria. Individual needs were classified into the following domains: social needs (2/17: 11.8%), spiritual needs (4/7: 23.5%), practical needs (4/17: 23.5%), daily living needs (5/17: 29.4%), patient-clinician communication (5/17: 29.4%), family-related needs (7/17: 41.2%), physical needs (8/17: 47.1%), psychological emotional needs (9/17: 52.9%), interpersonal/intimacy needs (11/17: 64.7%) and health system/Information needs (13/17: 76.5%). Conclusions: This systematic review has identified that men can experience a range of unmet supportive care needs with the most frequently reported being needs related to intimacy, informational, physical and psychological needs. Despite the emerging evidence-base, the current with-in study limitations precludes our understanding about how the needs of men evolve over time from diagnosis to living with and beyond prostate cancer. Whether demographic or clinical variables play a moderating role, only remains to be addressed in future studies. This review has made an important contribution by informing clinicians about the complex unmet supportive care needs of men affected by this disease. © 2015 Elsevier Ltd. All rights reserved.

Introduction Prostate cancer is a significant health burden in Europe and is now the most prevalent type of cancer in men in developed countries (excluding non-melanoma skin cancer) (Jemal et al., 2011). Since the emergence of the Prostate Specific Antigen Test (PSA) in the 1980's, the rate of prostate cancer diagnosis increased considerably. As the number of men diagnosed with prostate cancer continues to rise, as a consequence, more men will receive treatment and subsequently face the physical and psychological after effects of therapy (Prabhu et al., 2014). The follow-up after treatment for prostate cancer is necessary to monitor progression * Corresponding author. E-mail addresses: [email protected] (C. Paterson), allisonrobertson@ nhs.net (A. Robertson), [email protected] (G. Nabi). http://dx.doi.org/10.1016/j.ejon.2014.12.007 1462-3889/© 2015 Elsevier Ltd. All rights reserved.

of the disease or to detect recurrence, assess any adverse effects of treatment and to offer supportive care for any physical or psychosocial needs (Vieira et al., 2014). Up until now, the follow-up care for patients with prostate cancer after treatment has been traditionally led by secondary care. However, as the number of men living with and beyond prostate cancer increases (Røder et al., 2014), currently 250,000 men affected by this disease in the UK (Prostate Cancer UK, 2014), alternative models of follow-up care are being considered (Cowie et al., 2012; Ream et al., 2009; Vieira et al., 2014). Moreover, guidance from the National Institute for Clinical Excellence recommends that for patients undergoing active surveillance or watchful waiting, and for those patients with a stable PSA after at least 2 years who have had no significant treatment complications to consider follow-up outside of the hospital (for example, in primary care) (NICE, 2014). However, there is a dearth

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C. Paterson et al. / European Journal of Oncology Nursing 19 (2015) 405e418

of evidence on the optimum delivery of supportive care for men affected by this disease (O'Brien et al., 2010). In the UK, the Improving Outcomes Strategy for Cancer (Department of Health, 2013) recognises that not enough attention has been given to the long-term consequences of a cancer diagnosis, the need to maximise service delivery for the ever increasing number of individuals surviving the disease, or how to enable individuals to return to active lives following the completion of initial cancer treatment. The Survivorship Initiative has set out to understand the needs of those living with cancer and to develop models of care that meet their needs, with the goal being to support cancer survivors to live as healthy and active a life as possible, for as long as possible (Davies and Batehup, 2009; Richards et al., 2011). Supportive care is a person-centred approach to the provision of the necessary services for those living with or affected by cancer to meet their informational, spiritual, emotional, social, or physical needs during diagnosis, treatment, or follow-up phases including issues of health promotion and prevention, survivorship, palliation and bereavement (Carter et al., 2014; Hui, 2014; Rittenberg et al., 2010). Whist the physical and psychological sequelae of prostate cancer and its associated treatments have been well-documented (e.g. urinary, bowel, and sexual dysfunction, pain, fatigue, spinal cord compression, hot flushes, difficulties with self-image and masculinities) little is known about men's perceptions about the impact of these on their lives, and the areas in which they most require assistance (Hashine et al., 2014; Prabhu et al., 2014; van TolGeerdink et al., 2013; Waller and Pattison, 2013). One approach to quality of life evaluation that assesses supportive care requirements is needs assessment (Bonevski et al., 2000). Supportive care needs can be defined as requirements for care arising during treatment and illness to manage symptoms and sideeffects, enable adaption and coping, optimise understanding and informed decision-making, and minimise decrements in functioning (Ream et al., 2008). Therefore, identifying and addressing such needs for men affected by prostate cancer can prevent patient distress, improve quality of life and improve overall satisfaction with care (Carter et al., 2011), whist reducing healthcare utilisation and costs (Brown et al., 2001). There is evidence acknowledging that current care delivery is failing to provide a person-centred follow-up in this patient group (Richards et al., 2011) as men have voiced a number of unmet needs including: unmet informational needs (Carter et al., 2011; CockleHearne et al., 2013, 2012), enduring urological symptoms (Steginga et al., 2001), psychological problems (O'Brien et al., 2010; Ream et al., 2008) and sexual needs (Carter et al., 2011; Mason, 2008). In an era of limited healthcare resources it is a prerequisite to understand the evidence in relation to the unmet supportive care needs of service users to enable resources to be effectively targeted, with the ultimate goal of optimising the quality of care, and patients' quality of life (Richards et al., 2011). Therefore the aim of this systematic review was to synthesis current available evidence with regards to the unmet supportive care needs of men living with and beyond prostate cancer, driven by the following research questions: 1. What is the current evidence with regards to the different domains of unmet supportive care needs in men living with prostate cancer? 2. What are the most frequently reported individual domains of unmet need in the current available literature? Methods This systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-

Anaylses (PRIMSA) guidelines published in 2009 (Moher et al., 2009). Search strategy The following electronic databases were searched: DARE, Cochrane, MEDLINE, BNI, PsychINFO, and EMBASE following a twostep systematic search strategy to identify studies adopting a qualitative and/or quantitative methodology. The search architecture used a wide range of keywords and free text items to increase the sensitivity and inclusiveness of the searches (see Table 1). Inclusion and exclusion criteria were applied to all records identified. The electronic searches began on 15th September 2014 and concluded on the 15th of October 2014. All records were managed using the software package Endnote X4. The following pre-selection criteria were applied to all records. Inclusion Criteria Studies investigating the unmet/supportive care needs of men with prostate cancer irrespective of disease stage, treatment modality, or time since diagnosis Qualitative and quantitative methods irrespective of research design Studies published in the English language Studies conducted with adults (18 years old) Studies published in peer-reviewed journals between 1990 and 2014 Exclusion Criteria Studies testing the psychometric properties of Supportive Care Needs Questionnaires. Studies where unmet/supportive care needs were not explicitly reported. Studies conducted with patients with mixed cancer groups, except when separate sub-group analyses were reported.

Study selection and data extraction procedures The publications (titles and abstracts) were reviewed independently by members of the research team using a pro forma checklist to make decisions to include or not to include studies, based on the inclusion/exclusion criteria. All articles which met the inclusion criteria were retrieved in full-text. Any disagreements were resolved through discussion. Data extraction tables were specifically developed for this review, pilot tested on three randomly selected studies of the final sample, and subsequently refined as necessary (Centre for Reviews and Dissemination, 2008; The Cochrane Collaboration, 2009). One author extracted data from the final sample of studies. The included studies were subject to a quality appraisal conducted by the review team to inform the suitability of each individual study in the results synthesis based upon methodological quality. Quality appraisal Methodological quality evaluation was conducted using the two quality appraisal tools, one quantitative appraisal tool and one qualitative appraisal tool (Shaw et al., 2009) which enabled a plethora of methodologies to be evaluated. The quality appraisal tools have been used in a variety of systematic reviews, including prostate cancer (Paterson et al., in press, 2013). The quantitative appraisal tool assessed a range of designs including: RCT's, nonRCT, cohort, case-control, observational (for example, multiple


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Table 1 Electronic database searched and search terms useda. Electronic databases

Search terms

DARE Cochrane Medline EMBASE CINAHL PsychINFO

Step 1: Studies employing a quantitative methodology 1. “(MH “Patient Care Team”) OR (MH “Patient Care Planning”) OR (MH “Patient Care Bundles”) OR (MH “Patient Care”) OR “patient care” OR (MH “Patient-Centered Care”) OR (MH “Progressive Patient Care”) OR (MH “Patient Care Management”) OR (MH “Continuity of Patient Care”) OR (MH “Respite Care”) OR (MH “Social Support”) OR (MH “Training Support”) OR (MH “Financial Support”) OR (MH “Nutritional Support”) OR (MH “Employment, Supported”) OR (MH “Decision Support Techniques”) OR (MH “Subacute Care”) OR (MH “Ambulatory Care”) OR (MH “Health Planning Support”) OR “supportive care” OR (MH “Behavioural Symptoms”) OR (MH “Symptom Assessment”) OR (MH “Affective Symptoms”) OR “symptom control” OR (MH “Lower Urinary Tract Symptoms”) OR (MH “Urinary Diversion”) OR (MH “Urinary Catheters”) OR (MH “Urinary Catheterization”) OR (MH “Urinary Retention”) OR (MH “Urinary Incontinence”) OR (MH “Urinary Bladder”) OR “urinary symptoms” OR (MH “Signs and Symptoms, Digestive”) OR (MH “Sexual Dysfunction, Physiological”) OR (MH “Sexual Dysfunctions, Psychological”) OR (MH “Sexuality”) OR (MH “Erectile Dysfunction”) OR “sexual dysfunction” OR (MH “Information Literacy”) OR “information needs” OR (MH “Needs Assessment”) OR (MH “Spiritual Therapies”) OR (MH “Spirituality”) OR “spiritual needs” OR (MH “Pain”) OR “pain” OR (MH “Pain Measurement”) OR (MH “Palliative Care”) OR (MH “Hospice and Palliative Care Nursing”) OR “palliative” 2. “unmet needs” OR (MH “Care needs”) OR (MP “Patient$ need$) OR (MP “Needs Assessment”) OR (MP “Family Need$”) OR (MP “Caregiv$ need$”) OR (MP “Supportive care needs”) 3. 1 or 2 4. “(MH “Questionnaires”) OR “questionnair$” OR “tool$” OR “Scale” OR “instrument” OR (MH “Needs Assessment”) OR (MH “Nutrition Assessment”) OR (MH “Symptom Assessment”) OR (MH “Nursing Assessment”) OR (MH “Geriatric Assessment”) OR (MH “Patient Outcome Assessment”) OR (MH “Health Impact Assessment”) OR (MH “Process Assessment (Health Care)”) OR (MH “Outcome Assessment (Health Care)”) OR “assessment” OR (MH “Self-Evaluation Programs”) OR (MH “Evaluation Studies”) OR “evaluation” OR “validity” OR “inventory” OR “index” OR (MH “Checklist”) OR “checklist” OR (MH “Nutrition Surveys”) OR (MH “Health Care Surveys”) OR (MH “Health Surveys”) OR “survey” OR (MH “Longitudinal Studies”) OR (MH “Diet Surveys”) OR (MH “Nursing Audit”) OR (MH “Clinical Audit”) OR “audit measure” 5. “(MH “Prostatic Neoplasms, Castration-Resistant”) OR (MH “Prostatic Neoplasms”) OR “Prostate cancer” 6. 3 and 4 and 5 7. Limit 1990e2014 Step 2: Studies employing a qualitative methodology 1. “(MH “Patient Care Team”) OR (MH “Patient Care Planning”) OR (MH “Patient Care Bundles”) OR (MH “Patient Care”) OR “patient care” OR (MH “Patient-Centered Care”) OR (MH “Progressive Patient Care”) OR (MH “Patient Care Management”) OR (MH “Continuity of Patient Care”) OR (MH “Respite Care”) OR (MH “Social Support”) OR (MH “Training Support”) OR (MH “Financial Support”) OR (MH “Nutritional Support”) OR (MH “Employment, Supported”) OR (MH “Decision Support Techniques”) OR (MH “Subacute Care”) OR (MH “Ambulatory Care”) OR (MH “Health Planning Support”) OR “supportive care” OR (MH “Behavioural Symptoms”) OR (MH “Symptom Assessment”) OR (MH “Affective Symptoms”) OR “symptom control” OR (MH “Lower Urinary Tract Symptoms”) OR (MH “Urinary Diversion”) OR (MH “Urinary Catheters”) OR (MH “Urinary Catheterization”) OR (MH “Urinary Retention”) OR (MH “Urinary Incontinence”) OR (MH “Urinary Bladder”) OR “urinary symptoms” OR (MH “Signs and Symptoms, Digestive”) OR (MH “Sexual Dysfunction, Physiological”) OR (MH “Sexual Dysfunctions, Psychological”) OR (MH “Sexuality”) OR (MH “Erectile Dysfunction”) OR “sexual dysfunction” OR (MH “Information Literacy”) OR “information needs” OR (MH “Needs Assessment”) OR (MH “Spiritual Therapies”) OR (MH “Spirituality”) OR “spiritual needs” OR (MH “Pain”) OR “pain” OR (MH “Pain Measurement”) OR (MH “Palliative Care”) OR (MH “Hospice and Palliative Care Nursing”) OR “palliative” 2. “unmet needs” OR (MH “Care needs”) OR (MP “Patient$ need$) OR (MP “Needs Assessment”) OR (MP “Family Need$”) OR (MP “Caregiv$ need$”) OR (MP “Supportive care needs”) 3. 1 or 2 4. “(MP “Constant Comparison Method”) OR (MP “Content Analysis”) OR (MP “Discourse Analysis”) OR (MP “Ethnographic Research”) OR “Exp Patient Attitudes” OR “Exp Patient Perceptions” OR (MP “Focus Groups”) OR (MP “Interview$”) OR (MP “Field Stud$”) OR (MP “Phenomenology”) OR “Phenomenological Research” OR “Purposive Sample” OR (MP Qualitative Research”) OR “Theoretical Sample” OR (MP “Observational Research”) OR (MP “Ethnonursing Research”) OR “Open-Ended” OR (MP “Theoretical Saturation”) OR (MP “Themes”) OR (MP “Thematic”) OR “Narrative Anaylsis” OR “Narrativ$” OR “Lived Experience” OR (MP “Grounded Theory”) OR “Semi-structur$” 5. “(MH “Prostatic Neoplasms, Castration-Resistant”) OR (MH “Prostatic Neoplasms”) OR “Prostate cancer” 6. 3 and 4 and 5 7. Limit 1990e2014

a

Search strategy as conducted in Medline©.

time series, case studies, cross-sectional designs) and were classified as “good”, “fair” and “poor” according to the criteria specific to each study design (Shaw et al., 2009). The quantitative appraisal tool consisted of 18 items and three levels of quality assessment: good (2), fair (1), and poor (0). Some items in the quantitative assessment tool were only relevant to RCT's; therefore a “nonapplicable” item option was available for other research designs. Scores across the items were summed to create a quality score, and represented as a percentage to account for any non-applicable items. The qualitative appraisal tool had 15 items and three levels of quality assessment ranging from (2e0), and represented as a percentage score. Operational definition of domains of need Individual supportive care needs where classified into eleven primary domains of need based upon current literature (Butow et al., 2012; Carey et al., 2012; Cockle-Hearne et al., 2013; Fitch,

2008; Ford et al., 2012; Ream et al., 2008) and clinical expertise. Specifically, the domains include physical, psychosocial/emotional, family-related, social, interpersonal/intimacy, practical, daily living, spiritual/existential, health system/information, patient-clinician communication, and cognitive needs. See Table 2 for classification on supportive care needs domains, informed by the Supportive Care Needs Framework (Fitch, 2008) and the current definition of “supportive care needs” (Hui, 2014). Synthesis of study findings This review used a narrative synthesis and tabulation of primary research studies to generate broad findings and conclusions. Specifically, the narrative synthesis undertook the following steps: data reduction (sub-group classification based on the levels of evidence and the review questions), data comparison (iterative process of making comparisons and identifying relationships) and finally, conclusion and verification (checking primary data sources

408


Findings

Table 2 Classification of the 11 domains of supportive care needs.

Search results

Domain of need

Definition

Physical needs

Experience of physical symptoms such as fatigue, urinary symptoms, bowel symptoms, pain, hot flushes, etc. Experience of psychological/emotional symptoms such as anxiety, depression, worry, despair, fear, etc. Experience of fears/concerns for the family, dysfunctional relationships, etc. Experience of reduced social support, social isolation, loneliness, etc. Experience of difficulties with self-image and masculinities, reduced libido, erectile dysfunction, compromised intimacy with partner, fertility, etc. Situations of transportation, out-of-hours access to healthcare, financial support, etc. Experience of restriction in daily living tasks such as exercise, housekeeping, etc Existential concerns such as fear of death, death and dying, fears regarding afterlife, etc. Experience of a lack of information, uncertainty of follow-up care, lack of information in relation to treatment and diagnosis, etc. Quality of communication between patients and healthcare professionals, satisfaction with care, shared decision-making, etc. Experience of cognitive impairments, memory loss, etc.

Psychological/emotional needs Family-related needs Social needs Interpersonal/Intimacy needs Practical needs Daily living needs Spiritual/existential needs Health system/ information Patient-clinician communication needs Cognitive needs

Of the 7521 publications retrieved from the search 7473 were excluded following the application of the inclusion/exclusion criteria, see Fig. 1. This left 28 publications reviewed in full, 11 articles were excluded (Baker, 2004; Chambers et al., 2011; Duke et al., 2003, 2005; Engstrom, 2006; Jakobsson et al., 1997a; Kelsey et al., 2004; Lepherd, 2014; Letts et al., 2010; Templeton and Coates, 2001; Vieira et al., 2014) with reasons because they did not meet the inclusion criteria, see Fig. 1. This left 17 studies which fully met the inclusion criteria: 8 cross-sectional surveys (Boberg et al., 2003; Cockle-Hearne et al., 2013; Mason, 2008; Ream et al., 2008; Soeyonggo et al., 2012; Steginga et al., 2001; Templeton and Coates, 2003; Wong et al., 2000) and 9 exploratory qualitative studies (Carter et al., 2011, 2014; Evertsen and Wolkenstein, 2010; Jakobsson et al., 1997b; Kazer et al., 2011; O'Brien et al., 2011; O'Brien et al., 2010; Sinfield et al., 2008, 2012) see Table 3 for an overview of the studies included. This is a relatively small number of publications and indicates the relative lack of high quality research in this field. Methodological appraisal

for accuracy and confirmability) (Whittemore and Knafl, 2005). This process has been applied to several systematic reviews (Kennedy et al., 2008) including prostate cancer (Paterson et al., in press, 2013).

The methodological quality assessment of the retained studies was performed in parallel with the data extraction. Overall the methodological quality of the included studies varied from 53.3% to 90.0%, with a median score of 70% (IQR 17.5%). A median score of 70%, (IQR 18.35%, range 53.3%e83.3%) was yielded for the

Fig. 1. PRISMA


409

Table 3 Summaries of the 17 studies included. Author (year)

Purpose and context

Cockle-Hearne et al. Purpose: To explore the (2013). prevalence of unmet supportive care needs in men affected by prostate cancer Context: Mixed treatment modalities, cancer stage and time since diagnosis Setting: Seven European countries Country: UK (18.0%), The Netherlands (31.9%), Spain (17.9%), Denmark 12.5%), France (9.5%), Ireland (5.3%), Turkey 5.0%)

Soeyonggo et al. (2011)

Purpose: To evaluate the informational needs of men receiving androgen deprivation therapy Context: Men diagnosed with prostate cancer currently receiving androgen deprivation therapy at varying lengths of treatment for biochemical relapse or adjuvant therapy. Setting: Outpatient hospital clinic Country: Canada

Ream et al. (2008).

Purpose: To understand the unmet support needs for men affected by prostate cancer Context: Men treated with different treatment modalities, and varying lengths of time post diagnosis Setting: Six NHS Trusts in England Country: UK

Mason, 2008.

Purpose: To understand whether the needs of partners of men treated by brachytherapy Context: Partners of men at the time of hospitalisation for their brachytherapy. Setting: Teaching hospital Country: USA

Templeton and Coates (2003).

Purpose: To explore informational needs of men

Methods

Participant characteristics

Demographic: Age: < 50 years 1.7%, 51e60 years 14.2%, 61e70 years 53.0%, 71e80 years 27.9%, >81 years 3.1%; Marital Status: Living with other(s) 90.6%, living alone 9.4%; Ethnic Origin White 98.0%, Other ethnic groups 2.0%; Education: No qualifications 27.3%, Secondary School Education 27.6%, Diploma/Certificate 20.8%, Bachelor's/Masters/Doctorate 24.1% Clinical: Cancer stage: I 16.4%, II 16.4%, III 13.6%, IV 9.2%, Don't know 44.5%; Time since diagnosis: last month 2.4%, 1e2 months 2.0%, 3e6 months 9.2%, 7e12 months 12.0%, 1e2 years 24.6%, 3e4 years 18.9%, 5e10 years 23.7%, >10 years 7.0%; Treatment: Prostatectomy, Radiotherapy, Brachytherapy, HT, Chemotherapy, Hi-FU, AS, WW (typographical error in percentage distributions in original paper) Demographic: Age: 70.4 years Sample Size: n ¼ 85 (range 45e86); Marital Status: Sampling: Convenience Married 69%, Single 13%, Response Rate: 82.4% Divorced/Separated/Widowed Attrition: NA 17%; Educational Attainment: Design: Descriptive, exploratory cross-sectional less than high school 19%, high school 29%, College/University survey 24%, Postgraduate 28% Time Points: One Data Collection: CPS, SWD, Clinical: Treatment: GnRHa 90%, AA Monotherapy 5%, DRS, and open question items to assess information Combined ADT 4%; Treatment Length: n ¼ 23 < 6 months, needs n ¼ 26 6e18 months, n ¼ 36 Outcomes: Information 18months to 4 years. needs, decisional regret, satisfaction treatment decision and control. Demographic: Age: 70.2 years Sample Size: n ¼ 820 Sampling: Convenience (SD 8.5); Educational Response Rate: 44.4% Attainment: Most men Attrition: NA attained a formal qualification Design: Descriptive, (n ¼ 341, 46%); Ethnicity exploratory cross-sectional Caucasian British dominated survey the sample (n ¼ 675, 91%) Time Points: One Clinical: Treatment: Hormone Data Collection: SCNS, therapy 51%, Radiotherapy 28%, IPSS, EQ-5D and VAS, Prostatectomy 25%, Watchful Clinical and demographic Waiting 17%, Brachytherapy 4% data. Other treatments 7%; Outcomes: Treatment Status: Treatment n the past 47%, on treatment 37%, Watchful wait/no treatment 17%, missing data (n ¼ 2) Sample Size: n ¼ 65 wives, Demographic: Age: 60.8 years, SD 6.5; Ethnicity: White 93.9%, Sampling: Convenience African American 3.1%, Response Rate: Not Hispanic, 1.5%, Other 1.5%; reported Educational Attainment: Attrition: NA University 24.6%. Clinical: NA survey Time Points: One Data Collection: FIN-W, demographic data Outcomes: Unmet needs of partners. Sample Size: n ¼ 90 Demographic: Age: 48.9% were Sampling: Convenience aged 71e80 years; Marital Sample Size: n ¼ 3242 Sampling: Convenience Response Rate: n ¼ 1001 (30.9%) Attrition: NA Design: Descriptive, exploratory, cross-sectional online and paper questionnaire Time Points: One Data Collection: SCNS, EQ5D-3L, Experience of Supportive Nursing Care Outcomes: Quality of Life (mental affect and health state) and unmet needs

Limitations

Quality appraisal score

90% Selection bias is possible. Change over time was not assessed due to the cross sectional design. The SCNS questionnaire not validated for on-line use.

Selection bias is possible. Change over time was not assessed due to the cross sectional design. Small and unrepresentative sample size

80%

Selection bias is possible. Change over time was not assessed due to the cross sectional design. The generalisability of the findings is limited due to the sample being biased in favour of Caucasian men.

90%

Selection bias is possible. Change over time was not assessed due to the cross sectional design. Small sample size.

Selection bias is possible. Lack of information on the clinical

80.0%

65% (continued on next page)

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Table 3 (continued ) Author (year)

Purpose and context

Methods

Response Rate: 79% Attrition: NA Design: Descriptive, exploratory cross-sectional survey Time Points: One Data Collection: Data was collected via structured interviews. Adapted TINQBC, Assessment of knowledge Pro forma (developed by the researchers) Outcomes: Unmet informational needs, knowledge deficits Sample Size: n ¼ 272 Boberg et al. (2002) Purpose: To understand areas of unmet need in men Sampling: Convenience affected by prostate cancer Response Rate: 46% Attrition: NA Context: Men with localised disease 1e2 years Design: Descriptive crosssectional survey post treatment Time Points: One Setting: 6 hospitals Data Collection: MultiCountry: USA methods: 6 Nominal Groups (total n ¼ 39), Needs survey (n ¼ 233) Outcomes: Prevalence of unmet needs affected by prostate cancer. Context: Men treated by hormone therapy for 3 months or more. Setting: Three urology centres Country: UK


Limitations

Status: 67.8% were married Socioeconomic status: Social Class Two 37.8%. No further demographic data was presented. Clinical: No Clinical Information was presented. Men were treated with hormone therapy only.

characteristics of the study participants. Information needs over time could not be assessed due to the snap shot design.

Demographic: Age: 66.2, SD 8.4 years; Marital Status: Married 81%, divorced 4%, widowed 3%, single 3%, missing 7%; Ethnicity: Caucasian 90%, AfricaneAmerican 3%, Unknown/missing 7%; Educational Attainment: less than high school 5%, high school 25%, some college 15%, University Degree 46%, missing8% Clinical: Treatments: watchful waiting 2%, Prostatectomy 59%, radiotherapy 28%, brachytherapy 3%, hormone therapy 22%, orchiectomy 1%, missing 4%. No further clinical characteristics were reported Demographic: Age: mean 68 Sample Size: n ¼ 206 Stegina et al. (2001) Purpose: To assess years, range 48e85 years; Sampling: Convenience supportive care needs in Marital Status: 84% Married, Response Rate: 62% men affected by prostate 10% single or divorced, 6% Attrition: NA cancer widow; Education Design: Descriptive, Context: Men treated by exploratory cross-sectional Attainment: 42% 10 years of different treatment education, 35% High school survey modalities attending a education, 23% completed Time Points: One prostate cancer support University. Data Collection: SCNS group Clinical: Time since diagnosis: Outcomes: Unmet Setting: Seven Prostate range 1 monthe5 years; supportive care needs Cancer Support Groups Treatments: Prostatectomy Country: Australia 29%, radiotherapy 42%, hormone therapy 23%, orchidectomy 11%, palliative radiotherapy 4%, no treatment received 3% Demographic: Age: 70 ± 7 Sample Size: n ¼ 101 Wong et al. (2000). Purpose: To explore the informational needs of men Sampling: Convenience years; Marital Status: Married/ affected by prostate cancer Response Rate: 63.1% co-habiting 82.7%, Single 6.1%; Attrition: NA Context: Men treated by Education: High School Design: Cross-sectional different treatment Diploma of less 38%, correlation survey modalities Community College/University Time Points: One Setting: Two outpatient 62%,; Employment: Working Data Collection: oncology clinics in two 20.8%, Retired 77.2%, Disability/ Demographic and clinical University Teaching Other 2%. data, MSAS, MHI, LOT, Hospital Clinical: No clinical Information Preferences, Country: Canada information. Decision Making Preferences Outcomes: Symptoms, psychological health, information needs Demographic: n ¼ 2 primary Sample Size: n ¼ 19 Carter et al. (2014). Purpose: To understand care nurses, n ¼ 2 clinical trials Sampling: Purposive healthcare professionals nurses, n ¼ 1 medical sample perceptions of the oncologist, n ¼ radiation Response Rate: Not supportive care needs of oncology, n ¼ 1 social worker, reported men with advanced n ¼ 1 radiotherapist, n ¼ 2 Attrition: NA prostate cancer Context: Multidisciplinary Design: Descriptive cross- urologists, n ¼ 1 nurse cosectional qualitative study ordinator, n ¼ 1 research cohealthcare professionals

Selection bias is possible. Change over time was not assessed due to the cross sectional design. The generalisability of the findings is limited to Caucasian and educated men. Validity and reliability of the needs assessment questionnaire not reported.


60.0%

70% Selection bias is possible. Change over time was not assessed due to the cross sectional design. The generalisability of the findings is limited as the study sample was recruited from prostate cancer supports, and thus their supportive care needs may differ from men who do not participate in such support forums.

Selection bias is possible. Lack 65% of information on the clinical characteristics of the study participants. Information needs over time could not be assessed due to the snap shot research design.

Not all healthcare providers represented in this study sample, such as physiotherapists. One centre limits the transferability of the findings.

70.0%


411


Sinfield et al. (2012).

Purpose and context

Methods


involved in the care of men with advanced stage disease Setting: Urology Clinic Country: Canada

Time Points: One Data Collection: 5 Semistructured interviews and 2 focus groups Outcomes: Healthcare perceptions of unmet supportive care needs for men with advanced stage disease Sample Size: n ¼ 34 carers Sampling: Purposive sample, maximum variation Response Rate: No reported Attrition: NA Design: Descriptive crosssectional qualitative study Time Points: One Data Collection: 3 focus groups (total n ¼ 15) and n ¼ 19 semi-structured interviews of which n ¼ 13 face to face, and n ¼ 6 telephone Outcomes: Experiences of need of carers of men affected by prostate cancer. Sample Size: n ¼ 29 Sampling: Purposive sampling based on principles of saturation Response Rate: Not reported Attrition: NA Design: Descriptive crosssectional qualitative study using Sandelowski (2000) approach Time Points: One Data Collection: 17 men participated in focus groups, and 12 men participated in a one-toone in depth semistructured interview. Outcomes: Experiences of unmet supportive care needs Sample Size: n ¼ 45 (patients) and n ¼ 18 (partners) Sampling: Purposive maximum variation sampling. Response Rate: Not reported. Attrition: NA Design: Descriptive crosssectional qualitative study Time Points: One Data Collection: Semistructured face-to-face interviews (n ¼ 35 patients, n ¼ 18 partners) Outcomes: Experiences of unmet psychosexual needs of men and their partners affected by prostate cancer. Sample Size: n ¼ 7 Sampling: Convenience Response Rate: Not reported Attrition: NA Design: Descriptive crosssectional qualitative study

ordinator and n ¼ 1 nurse practitioner in incontinence. Average time working with men with advanced stage prostate cancer: range 0.5 e20 h. No further demographic information reported. Clinical: NA

Purpose: To further understand the experiences and needs of carers of men living with and beyond prostate cancer Context: Relatives of men affected by prostate cancer Setting: Two hospitals Country: UK

Carter et al. (2011). Purpose: To understand the unmet healthcare needs of men with advanced prostate cancer Context: Men affected by advanced hormone sensitive and hormone refractory prostate cancer. Setting: One hospital Country: Canada

O'Brien et al. (2011) Purpose: To gain insights into unmet psychosexual needs of men affected by prostate cancer Context: Men treated by different treatment modalities and their partners Setting: Nine General Practice Centres Country: UK (North Wales, East Lothian, Thames Valley)

Kazer et al. (2011).

Purpose: To understand the needs of men under going active surveillance Context: Men diagnosed with prostate cancer undergoing active surveillance over 65 years

Limitations


Demographic: Age: 22e54 years 32.4%, 55e64 years 26.5%, 65e74 years 29.4%, 75þ “years” 11.8%; Ethnicity: White 73.5%, Black 14.7, Asian 8.8%, other 2.9% Clinical: Patients treatment profile: Brachytherapy 17.6%, radiotherapy 11.8%, radiotherapy and chemotherapy 5.9%, radiotherapy and hormone therapy 8.8%, prostatectomy 14.7%, hormone therapy 17.6%, hormone therapy and chemotherapy 11.8%, watchful waiting 5.9% and HIFU 2.9%

Selection bias is possible. The transferability of the study findings is limited due to the small sample size.

83.3%

Demographic: Age: Hormonesensitive prostate cancer (76 years [SD not reported], range 59e88 years), hormone refractory prostate cancer (75 years [SD not reported], range 61e85 years); Marital Status: Married n ¼ 23, Widowed n ¼ 5, Divorced n ¼ 1; Employment: Self-employed n ¼ 1, Part-time n ¼ 2, Disabled n ¼ 2, Retired n ¼ 24. Clinical: Years since diagnosis: Hormone sensitive group (mean 7 years, [SD not reported), range 1e13 years), Hormone refractory group (mean 8 years, [SD not reported], range 1e16 years)

Selection bias is possible. Change over time not assessed due to the cross-sectional study design. Limited clinical and demographic description of the study participants.

66.6%

Demographic: Age: 50e59 years (n ¼ 1), 60e69 years (n ¼ 16), 70e79 years (n ¼ 14), 80e89 years (n ¼ 4) Clinical: Time since diagnosis: range 1e14 years; Treatment: Prostatectomy (n ¼ 12), Radiotherapy (n ¼ 7), Hormones þ Radiotherapy (n ¼ 2), Watchful Waiting (n ¼ 4) Hormones (n ¼ 8), Active Surveillance (n ¼ 1)

Selection bias is possible. Limited description of the setting and the characteristics of the study participants compromise the transferability of the findings.

80.0%

Demographic: Age: mean 70 years (range 65e79 years); Ethnicity: n ¼ 7 Caucasian. Clinical: All men undergoing active surveillance not further clinical information reported.

Selection bias is possible. Change over time was not assessed due to the cross sectional design. Small and unrepresentative sample size. Limited demographic and clinical information reported.

53.3%

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Purpose and context

Methods

Setting: No reported Country: USA

Time Points: One Data Collection: 2 focus groups Outcomes: Men's experiences of their needs undergoing active surveillance Sample Size: n ¼ 35 Sampling: Purposive sample, maximum variation Response Rate: Not reported Attrition: NA Design: Descriptive crosssectional qualitative study Time Points: One Data Collection: Semistructured face-to-face interviews Outcomes: Experiences of care and unmet needs of men affected by prostate cancer Sample Size: n ¼ 14 partners Sampling: Convenience Response Rate: Not reported Attrition: NA Design: Descriptive crosssectional qualitative study Time Points: One Data Collection: Two focus groups Outcomes: Partners experiences of their support needs and interactions with healthcare professionals Sample Size: n ¼ 35 patients, n ¼ 10 female partners Sampling: Purposive sample, maximum variation Response Rate: Not reported Attrition: NA Design: Descriptive crosssectional qualitative study Time Points: One Data Collection: Semistructured face to face interviews Outcomes: Experiences of care Sample Size: n ¼ 11 Sampling: Convenience Response Rate: Not reported Attrition: NA Design: Descriptive crosssectional phenomenological qualitative study Time Points: One Data Collection: In-depth face-to-face semistructured interviews Outcomes: Experiences of how nursing staff met the needs of men affected by prostate cancer

O'Brien et al. (2010) Purpose: To understand prostate cancer survivors experience of care and explore areas of unmet needs Context: Men treated with different treatment modalities, and varying lengths of time post diagnosis Setting: 20 General Practices Country: UK

Evertsen and Wolkenstein, (2010)

Purpose: To explore women's support needs of their partners diagnosis and treatment of prostate cancer Context: Partners of men treated with radical surgery Setting: Hospital setting Country: USA

Sinfield et al. (2008).

Purpose: Develop an understand of patients and their partners needs for supportive care Context: Men affected by prostate cancer treated with different modalities and their partners experiences, at varying stages in their cancer journey Setting: Two outpatient clinics Country: UK

Jakobsson et al. (1997a,b)

Purpose: To explore patients experiences of nursing care needs Context: Men affected by prostate cancer treated by different treatment modalities. Setting: Urology outpatient clinic Country: Sweden


Limitations


Demographic: Age: range 59 e82 years Mean and SD no reported). No further demographic data presented. Clinical: Time since diagnosis: range 0.75e10 years (mean and SD not reported). No further clinical characteristics reported.

Selection bias is possible. Lack of information on the clinical and demographic characteristics of the study participants.

76.7%

Demographic: Age: 62.6 years (range 47e77); Ethnicity: nonHispanic white n ¼ 12, black n ¼ 1 No further demographic data reported Clinical: Time since diagnosis of men: range 1e18 months; Treatment: All men treated by prostatectomy. No further clinical data reported.

Selection bias is possible. Change over time was not assessed due to the cross sectional design. The transferability of the study's findings limited due to small sample size, and limited demographic and clinical data

60.0%

Demographic: Age: n ¼ 17 over 70 years, n ¼ 13 aged 55e70 years, n ¼ 5 under 55 years; Ethnicity: n ¼ 26 white Caucasian, n ¼ 5 AfroCaribbean, n ¼ 4 South Asian. Clinical: Newly diagnosed localised disease n ¼ 2 prior to treatment, newly diagnosed locally advanced disease, metastatic n ¼ 1, Active surveillance n ¼ 7, received radical treatment (radiotherapy, prostatectomy combination therapy with radiotherapy and HT) n ¼ 17, Hormone therapy n ¼ 8 Demographic: Age: 74 years (median); Marital Status: Married n ¼ 10, single ¼ 1 Clinical: Treatment: Options e surgery, radiotherapy, hormone therapy (the frequency distribution not accurately reported); Length of hospital stay: 6 days median.

Selection bias is possible. The transferability of the study findings is limited due to the small sample size.

76.7%

Selection bias is possible. Change over time was not assessed due to the cross sectional design. The transferability of the study's findings limited due to small sample size, and limited demographic and clinical data

60.0%

Abbreviations: SCNS e The Supportive Care Needs Survey; EQ-5D-3L e EuroQual EQ-5D-3L; MSAS e The Memorial Symptom Assessment Scale; MHI e The Rand Mental Health Inventory; LOT e Life Orientation Test; TINQ-BC e Breast Cancer version of the Toronto Informational Needs Questionnaire; IPSS e The International Prostate Symptom Score; CPS e Control Preferences Scale; SWD e Satisfaction with Decision Scale; DRS e Decisional Regret Scale; GnRHa e Gonadotrophin-releasing hormone agonists; ADT e Androgen Deprivation Therapy; AA Monotherapy e Anti-androgen monotherapy; FIN-W e The Family Inventory of Needs-Wives.


qualitative studies, whereas for the quantitative component the median score was 75%, (IQR 22.5%, range 65.0%e90.0%). Overall the studies were observational and descriptive (see Table 3). The studies were conducted in a variety of countries including the following: Canada (n ¼ 4), UK (n ¼ 6), USA (n ¼ 4), Australia (n ¼ 1), Sweden (n ¼ 1) and one study was conducted across a number of European countries (UK, Netherlands, Spain, Denmark, France, Ireland, and Turkey). The sample sizes ranged from n ¼ 1001 to n ¼ 7 with a total sample of n ¼ 2914 across all studies. Based on the Department of Health's (Department of Health, 2001) typologies of supporting evidence all of the studies were classified as C1 (Descriptive and other research or evaluations [e.g. convenience samples]). This underscores that this field is still in its infancy. Ten of the seventeen studies were multi-centred, whereas the 6 remaining studies were conducted only at one clinical site. The majority of the studies used convenience samples (10 of the 17 studies, 58.8%), and the response rates ranged from 30.9% to 82.4%, with 10 studies providing no information on response rates (Carter et al., 2011, 2014; Evertsen and Wolkenstein, 2010; Jakobsson et al., 1997b; Kazer et al., 2011; Mason, 2008; O'Brien et al., 2011; O'Brien et al., 2010; Sinfield et al., 2008, 2012); thus selection bias is likely. Noteworthy, all of the included studies in this review were crosssection and therefore, very little is known about how men's supportive care needs change over time. There was a range of clinical and demographic characterises of the study samples. The majority of the study sample characteristics consisted of a mixed treatment modality sample (Boberg et al., 2003; Cockle-Hearne et al., 2013; Jakobsson et al., 1997b; O'Brien et al., 2010; Ream et al., 2008; Sinfield et al., 2008; Steginga et al., 2001; Wong et al., 2000), treated by hormone therapy (Carter et al., 2011; Soeyonggo et al., 2012; Templeton and Coates, 2003), carer's of men with prostate cancer disease (Evertsen and Wolkenstein, 2010; Mason, 2008; Sinfield et al., 2012) or consisted of healthcare professional's caring for men with advanced stage prostate cancer (Carter et al., 2014). For the most part the study samples were biased in favour of married, white Caucasian individuals with a good educational attainment. Evidence of unmet supportive care needs by domain Physical needs Eight studies (Carter et al., 2011, 2014; Cockle-Hearne et al., 2013; Jakobsson et al., 1997b; Mason, 2008; Ream et al., 2008; Soeyonggo et al., 2012; Steginga et al., 2001) described unmet physical needs of men affected by prostate cancer. These included urinary symptoms (urinary incontinence, incomplete emptying, frequency, dysuria, urgency, weak stream, straining or nocturia) (Carter et al., 2011; Cockle-Hearne et al., 2013; Jakobsson et al., 1997b; Ream et al., 2008), hot flushes (Carter et al., 2011; Cockle-Hearne et al., 2013; Ream et al., 2008; Soeyonggo et al., 2012), enduring bowel symptoms (CockleHearne et al., 2013), fatigue (Carter et al., 2011; Jakobsson et al., 1997b; Steginga et al., 2001), weight gain (Carter et al., 2011; Soeyonggo et al., 2012), breast soreness (Carter et al., 2011) and fatigue (Jakobsson et al., 1997b). The largest within sample population (n ¼ 1001) (Cockle-Hearne et al., 2013) reported unmet physical needs prevalent in 40.7% of the sample. Moreover, carers of men with prostate cancer have voiced that they have unmet needs from a carers perspective in how they can provide physical care to their husbands (Mason, 2008) due to a lack of information. Healthcare professional's perceptions of unmet supportive care needs of men affected by advanced prostate cancer include pain control and symptom management

413

(Carter et al., 2014). Healthcare professionals caring for men with advanced stage disease have reported challenges in providing optimum symptom management due to limited time and resource in the clinical setting (Carter et al., 2014). Psychological/emotional needs Consistently emotional needs were reported across nine studies (Boberg et al., 2003; Carter et al., 2011, 2014; Cockle-Hearne et al., 2013; Kazer et al., 2011; O'Brien et al., 2011; O'Brien et al., 2010; Ream et al., 2008; Steginga et al., 2001). Men experienced anxiety about the uncertainty of PSA results (Kazer et al., 2011; O'Brien et al., 2010), uncertainty about the future, fear of the cancer returning or spreading (Boberg et al., 2003; Carter et al., 2011; Steginga et al., 2001), angry, sadness, frustration, regret (Carter et al., 2011) and concerns about the worries of those close to them (Steginga et al., 2001). For some men they expressed unresolved feelings of treatment regret of more than 10 years since their diagnosis (Carter et al., 2011). Furthermore, higher psychological need has been found to be significantly correlated with uncertainty of remission status (Ream et al., 2008) and inadequate information about the long-term effects of treatment (CockleHearne et al., 2013). Men also experienced profound psychological/emotional need in relation to their sexual function that surfaced after the imminent threat to their survival had passed (O'Brien et al., 2011). Healthcare professionals noted that men require emotional support to help them cope with uncertainly and fears related to disease and disease progression; however they reported limited time availability to discuss the issues with the man and his family members, and they consider this sub-optimal (Carter et al., 2014). Family related needs There were a number of unmet needs from the carer/family member's perspective in relation to living with the impact of a prostate cancer diagnosis (Evertsen and Wolkenstein, 2010; Kazer et al., 2011; Mason, 2008; O'Brien et al., 2011; Sinfield et al., 2012; Steginga et al., 2001). Carers reported having inadequate emotional support to help them also to adjust to living with prostate cancer as well (O'Brien et al., 2011; Sinfield et al., 2012). In some instances, carers/wives reported a lack of support from their friends and wider family unit because of the patient's reluctance for other people to know about the prostate cancer diagnosis (Sinfield et al., 2012). Other needs were about knowing how to tell the family about the prostate cancer diagnosis (Mason, 2008). Consequently, carers/wives had to conceal and suppress their own emotional support needs to protect their husbands. Men and women also spoke about a “loss of manhood” secondary to a decrease sexual function and libido; some women also spoke about the innate instinct to provide for his family following treatment (Evertsen and Wolkenstein, 2010; Steginga et al., 2001). Social needs Men experienced that due to living with a decreased functional ability this significantly reduced their social activities (Carter et al., 2011). Urinary symptoms and incontinence had a negative effect on men's social needs as they could no longer participate in sporting activities, hobbies or attend social event (Carter et al., 2011). Other men spoke about the enduring consequence of fatigue on their daily social activities (Carter et al., 2011). Some men experienced a sense of loneliness and felt on their own dealing with their illness with nobody to speak to (Jakobsson et al., 1997b).

414


Interpersonal/intimacy needs Unmet sexuality-related needs featured in a number of studies (Boberg et al., 2003; Carter et al., 2011; Evertsen and Wolkenstein, 2010; Kazer et al., 2011; Mason, 2008; O'Brien et al., 2011; O'Brien et al., 2010; Ream et al., 2008; Sinfield et al., 2012; Steginga et al., 2001). The consequences of sexual dysfunction affected relationships (Carter et al., 2011), emotional outcome (Carter et al., 2011) and some men voiced that often sexuality related needs were often poorly explored within clinical consultations (O'Brien et al., 2010), and this was noteworthy for older men. Older men affected by prostate cancer avoided initiating discussions about their sexuality because they were too embarrassed to admit that they had sexual need at their age (O'Brien et al., 2011). Men reported unmet needs in understanding ways to self-manage their impotence (Boberg et al., 2003). Some individuals shared their concerns about ejaculating during intercourse because of concerns of having cancer in the semen (Kazer et al., 2011). For others it was the reluctance to have sex in case it caused their PSA level to rise (Kazer et al., 2011). Partners of men with prostate cancer also identified unmet support needs in coping with the changes in their relationship and were hindered by a lack of confidence and reluctance, also not knowing who to contact for help (Evertsen and Wolkenstein, 2010; Sinfield et al., 2012). Wives felt that they needed a better understanding of how best to discuss the changes in their partners change in sexual function with them, or how to touch their husbands following treatment (Mason, 2008). Practical needs There were several practical needs identified and these included: how to get financial support (Sinfield et al., 2012) and travel insurance (Sinfield et al., 2012) housekeeping (Sinfield et al., 2008), where to get supplies of incontinence pads (Sinfield et al., 2008) easy parking facilities at the hospital or clinic (Steginga et al., 2001) and resources for dealing with incontinence (Carter et al., 2014). Men identified concern for the financial burden experienced as a result of living with a long-term disability, unemployment and for some, expensive medical cost associated with treatments (Carter et al., 2014).

Cockle-Hearne et al., 2013; Evertsen and Wolkenstein, 2010; Jakobsson et al., 1997a,b; O'Brien et al., 2010; Ream et al., 2008; Sinfield et al., 2008, 2012; Soeyonggo et al., 2012; Steginga et al., 2001; Templeton and Coates, 2003; Wong et al., 2000). Patients identified problems with the provision of information provided to them including, staff making contradictory statements, lack of clarity about the arrangements for treatment, instances of no explanation of the success of treatment, a lack of information about the practicalities of managing incontinence, test results not being discussed (O'Brien et al., 2010; Sinfield et al., 2008; Steginga et al., 2001) and little clarity about the role of primary care, in relation to initiating follow-up appointments and PSA testing (O'Brien et al., 2010). Other men wanted to understand effective self-management of side-effects, how to improve their recovery following treatment (Carter et al., 2011; Steginga et al., 2001; Templeton and Coates, 2003; Wong et al., 2000), types of treatment available (Carter et al., 2011), psychological care and the future (Boberg et al., 2003; Carter et al., 2011; Soeyonggo et al., 2012; Steginga et al., 2001; Templeton and Coates, 2003), information about local support groups (Carter et al., 2011; Steginga et al., 2001) and complementary medicine (Boberg et al., 2003; Carter et al., 2011). One study identified remission status was significantly associated with unmet informational needs (Ream et al., 2008). From a carers/wives perspective of men with prostate cancer, they also had unmet information needs in relation to the care of the patient at all phases of the care pathway, from referral onwards. Specific information needs related to written information on the condition, what to expect for recovery, and information about ways to deal with the emotional and social implications of coping with prostate cancer (Evertsen and Wolkenstein, 2010; Sinfield et al., 2008, 2012). Healthcare professionals reported that men repeatedly expressed a need for information about treatments, side-effects, and alternative therapies (Carter et al., 2014). They experienced that often men had difficulty understanding and retaining information provided to them by healthcare professionals at the point of diagnosis, and thus increased the risk that men will be unprepared and have poor knowledge about the negative effects of treatment (Carter et al., 2014).

Daily living needs Patient-clinician communication needs Unmet daily living needs have found to be significantly associated with treatment modality (Ream et al., 2008). Men treatment by androgen deprivation therapy, combination therapy (Ream et al., 2008) or men treated by chemotherapy (Cockle-Hearne et al., 2013) were found to experience more daily living needs. Men reported difficulties with their daily activities because of a lack of energy and fatigue (Jakobsson et al., 1997a,b; Steginga et al., 2001), hot flushes, sweating, weakness and weight gain (Carter et al., 2011). Spiritual needs Men experienced a number of worries related to fear of the cancer returning and for others it was fear of the cancer spreading (Steginga et al., 2001). Existential concerns were reported by men with advanced stage disease in relation to disease progression, prognosis and end-of-life (Carter et al., 2011). Men shared concerns about uncertainty of the future (Boberg et al., 2003; Carter et al., 2014) and unmet support needs in relation to prognosis and the possibility of death (Boberg et al., 2003). Health system/information needs There were a number of information needs identified across the reviewed studies (Boberg et al., 2003; Carter et al., 2011, 2014;

Some patients perceived that they didn't have enough time to spend with the doctor during their consultation (Jakobsson et al., 1997a,b; Soeyonggo et al., 2012), others felt that they needed more “honest” information about how long and difficult the recovery would be, and that they needed supported selfmanagement to coping the adverse effects of treatment from their clinician (Evertsen and Wolkenstein, 2010). Other men experienced that the focus of their consultation was targeted on the physical aspects, rather than dealing with the psychological consequences of sexual dysfunction (O'Brien et al., 2010) and providing emotional support (Jakobsson et al., 1997a,b). Men voiced that due to a lack of continuity of follow-up hospital appointments this made it difficult to establish a relationship and rapport to disclose problems with sexual dysfunction (O'Brien et al., 2010). Frequency of supportive care needs documented in the literature In ascending order of the frequency of needs reported in the reviewed studies: social needs (2/17: 11.8%), spiritual needs (4/7: 23.5%), practical needs (4/17: 23.5%), daily living needs (5/17: 29.4%), patient-clinician communication (5/17: 29.4%), familyrelated needs (7/17: 41.2%), physical needs (8/17: 47.1%), psychological emotional needs (9/17: 52.9%), interpersonal/intimacy


needs (11/17: 64.7%) and health system/Information needs (13/17: 76.5%), see Table 4. Discussion In light of recent changes in the economy and the drive for costeffective healthcare, current cancer care practice of the NHS needs to be reviewed and revised (Department of Health, 2013). Consequently, this systematic review set out to identify the unmet supportive care needs of men affected by prostate cancer, and identify the most frequently reported unmet needs in the literature to inform service redesign. This review has made an important contribution by informing healthcare professionals about the complex person-centred supportive care needs of men and their carers/wives affected by prostate cancer, but undoubtedly, this field is under-researched and requires high quality prospective longitudinal research to understand how needs change over time. Men continue to experience a range of unmet supportive care needs with the most frequently reported in the literature including intimacy, informational, physical and psychological needs. Men with prostate cancer are often left to grapple with poor quality of erections, reduced libido and concerns about changes in body appearance, such as reduced penile length (Letts et al., 2010). For men affected by this disease often these negative consequences are experienced concurrently and are interrelated. It has been welldocumented that sexual morbidity is a significant and persisting issue (Sivarajan et al., 2014) that affects quality of life (Davis et al., 2014) and psychological adjustment for many years following treatment (Tavlarides et al., 2013) and once the immediate threat of cancer has passed (O'Brien et al., 2011). Some men reported unmet supportive care needs for sexual well-being as a consequence of a lack of exploration in clinical consultations, embarrassment, and inadequate self-management advice (Boberg et al., 2003; O'Brien et al., 2011; O'Brien et al., 2010). Partners of men affected by prostate cancer also identified unmet needs related to a lack of understanding of how best to support their partner with coping with changes in their relationship, that often was further compounded by a lack of confidence and poor signposting of who to speak with for help (Evertsen and Wolkenstein, 2010; Sinfield et al., 2012). Given the increasing incidence and survival of men with prostate cancer, it is timely and appropriate to develop familyrelational-psychosexual interventions for couples to address areas of unmet needs. Furthermore, consistent provision of specialist nurses is needed across the care pathway, with training to address sexual and psychological needs as a priority for enhancing supportive care (Ream et al., 2009). Unmet psychological and emotional needs can manifest in the negative effects of uncertainty of cancer progression or returning, uncertainty of PSA results, and for some decisional regret following treatments (Boberg et al., 2003; Carter et al., 2011; Kazer et al., 2011). Men are typically in frequent users of emotional support services and self-help groups that provide peer support to enhance emotional and informational support (Krizek et al., 1999; Shapiro et al., 2004). A small minority of men will use such peer support services and often they perceive peer support as extremely valuable. However, new interventions are needed to complement existing services to address the needs of the majority of men living with this disease (Steginga et al., 2001) who do not access peer support services. Health system and information needs were identified as priority areas for unmet need in this review (Carter et al., 2011; CockleHearne et al., 2013; O'Brien et al., 2010; Ream et al., 2008; Sinfield et al., 2008; Steginga et al., 2001). Prostate cancer is a clinical area where there is contention about the optimal medical treatment, particularly in the case of localised disease. Shared decision making processes between patients and clinicians on the optimum

415

treatment for their disease require the need for high quality information to reduce ambiguity and uncertainty for the man. A further prominent theme from the reviewed literature was in relation to a lack of self-management information and support (Carter et al., 2011; Templeton and Coates, 2003; Wong et al., 2000) in coping with unmet physical and psychological needs. To date little evidence exists that identifies mens' self-management behaviours, or the effectiveness of such strategies overtime (Paterson et al., in press). The development of evidence-based self-management guidelines informed through expert clinical consensus is pressing as evidence (Department of Health, 2012) suggests that information and preparation for cancer follow-up is limited to support men to cope with the adverse effects of treatment. Whilst it is apparent that informational, intimacy, physical and psychological needs were prominent in the studies reviewed, spiritual, daily, social and wider family needs received little focus to date, and are relatively under researched. In light of these domains being recognised by the definitions of supportive care and corresponding frameworks (Hui, 2014; Rittenberg et al., 2010), these finding are relatively surprising. With unmet needs being identified in these domains (Carter et al., 2011; Evertsen and Wolkenstein, 2010; Ream et al., 2008; Steginga et al., 2001) further empirical evidence is needed to explore these areas in greater depth. There was wide heterogeneity across the studies in this review and identified a number of important gaps in current methodology. First off, all of the studies that have been conducted to date are cross-sectional; hence our knowledge base is limited to a “snapshot”. As the population of men affected by prostate cancer increases, as does the need for monitoring and management, we therefore need to understand how supportive care needs change over time to enable healthcare professionals to target effective person-centred supportive care in a timely and appropriate manner. A further area of methodological limitation in the evidence base is the influence of co-morbidities on the supportive care needs in men with prostate cancer. Increases in supportive care needs could be as a consequence of other diseases, and therefore increase the overall needs reported, not just specific to prostate cancer. To overcome the potential for co-morbidity bias in future studies, comorbidity should be measured and controlled for in the research design (Kerr et al., 2007). Moreover, another limitation of the existing research is retrospective memory recall in the assessment of supportive care needs. Retrospective questionnaires and interview techniques are prone to serious errors and biases as a result of autobiographical memory, as this places demands on the participant to accurately recall their experiences (for example, recalling experiences in the past month) (Shiffman et al., 2008; Stone et al., 2005). Consequently, the “real life” validity of the data presented is unknown (Jones and Johnston, 2011). In addition, ecological fallacy can also be problematic in the interpretation of group level questionnaire data, whereby inferences about the nature of “individuals” has been incorrectly based on aggregate statistics. To overcome such limitations, literature supports the use of patient reported outcomes in routine clinical practice (Department of Health, 2010) enabling a systematic and “real time” assessment of person-centred supportive care needs, to enable interventions to be appropriately targeted. Healthcare professionals have identified challenges in providing optimum symptom management due to limited time and resource in the clinical setting (Carter et al., 2014). As a consequence, asking men to complete patient-reported outcome measures prior to their clinical consultation, communication between the patient and the healthcare professional can be improved, patients can experience greater satisfaction with care, enable an opportunity for tailored self-management advice, and promote targeted and better management of side-effects in line with patient need (Donaldson, 2008; Wu and Snyder, 2011).

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Table 4 Frequency of supportive care needs. Domain of need explored Study

Physical needs

Psychological/ Family related emotional needs needs

Social needs

Interpersonal/ Practical needs intimacy needs

Daily living needs

Spiritual needs

Health system/ information needs

Patient-clinician communication

Cognitive needs

Number of domain s explored within each study

Carter et al. (2014). Cockle-Hearne et al. (2013). Sinfield et al. (2012). Carter et al. (2011). O'Brien et al. (2011) Kazer et al. (2011). Soeyonggo et al. (2011) Evertsen and Wolkenstein (2010). O'Brien et al. (2010) Mason (2008) Ream et al. (2008). Sinfield et al. (2008). Boberg et al. (2003). Templeton and Coates (2003). Steginga et al. (2001). Wong et al. (2000). Jakobsson et al. (1997a,b) Number of domains explored across all studies

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There are a number of important clinical implications for this review. Regardless of the clinical characteristics and time since treatment across the reviewed studies, men have reported a range unmet supportive care needs. Investing time, systematic assessment and using effective interpersonal communication to deliver supportive care is a central message to all healthcare professionals. This review suggests that greater attention should be focused on the side-effects that men are embarrassed and reticent to discuss, perhaps due to the stigma associated with them. Potentially the management of these would be improved by implementing “paper and pen” patient-reported outcome measures in routine clinical practice, as to avoid men from having to verbalise embarrassing concerns aloud; but instead healthcare professionals can tactfully focus the consultation to the areas of most concern to the man, ensuring personalised and optimal care. Review strengths and limitations One of the major challenges of this review was combining heterogeneous methodologies, and our findings are constrained

due to the methodological limitations of the studies included. Despite this the review team follow-up a rigorous and transparent review methodology based upon the PRIMSA guidelines (Moher et al., 2009) to promote reproducibility. This review has enabled a broad summary of the evidence which has facilitated refinement of future research directions and identified a number of important clinical implications for prostate cancer care. Conclusion This systematic review has identified that men can experience a range of unmet supportive care needs with the most frequently reported being needs related to intimacy, informational, physical and psychological needs. Despite the emerging evidence-base, the current with-in study limitations precludes our understanding about how the needs of men evolve over time from diagnosis to living with and beyond prostate cancer. In the meantime, clinicians are encouraged to use these findings in their clinical consultations to help them to deliver person-centred supportive care in an effective and timely manner.


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