Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 2015; 16: 196–201

Multidisciplinary ALS clinics in the USA: A comparison of those who attend and those who do not

HELEN E. STEPHENS1, STEPHANIE FELGOISE3, JARED YOUNG3 & ZACHARY SIMMONS2 1Department of Neurology and 2Departments of Neurology and Humanities, The Pennsylvania State University College of Medicine, Hershey, Pennsylvania, and 3Department of Psychology, Philadelphia College of Osteopathic Medicine, Philadelphia Pennsylvania, USA

Abstract Optimization of quality of life (QoL) is perceived by many as the primary goal for patients with amyotrophic lateral sclerosis (ALS), often via multidisciplinary clinics (MDCs). The aim of this study was to examine the differences in QoL, physical function, and social problem-solving skills for individuals with ALS attending MDCs compared to non-attenders. An online survey was completed by 295 people with ALS in the United States. Results showed there were no differences between the groups in global QoL, measures of physical function, or social problem-solving skills. Attenders and non-attenders of MDCs reported similar use of treatments for their ALS, although attenders received more health care services from nurses, therapists, social workers, dieticians, and in-home care providers. In conclusion, oher instruments may be needed to assess the benefits of MDCs. Qualitative studies of attenders and non-attenders of MDCs may reveal important differences that could guide care. Keywords: Multidisciplinary care, quality of life, problem solving, amyotrophic lateral sclerosis

Introduction Symptomatic treatments are the keys to good care for patients with ALS (1). Because of the wide variety of challenges to the patient and caregiver, multidisciplinary clinics (MDCs) have been established to optimize QoL for these individuals (2). Components of the MDC include oversight by an ALS specialist physician (usually a neurologist), highly specialized nursing care, respiratory and nutritional management, speech therapy, physical and occupational therapy, social work and mental health counseling. MDCs often are guided by the practice parameters for care in ALS recommended by the American Academy of Neurology (3,4). Research on the impact of MDCs on various measures in patients with ALS is limited but generally positive, with most data suggesting that attending a MDC improves care, survival rates, and QoL in people with ALS. One prospective populationbased study in Ireland found a significant increase in survival, more frequent use of riluzole, more frequent evaluations of patients, and increased use of interventions based on published practice parameters in those patients attending MDCs compared to those followed by a general neurologist (5). General

neurology clinic patients in this study were evaluated biannually; pulmonary tests were infrequently performed; and there was less emphasis on early interventions with gastrostomy feeding and non-invasive ventilation (NIV). An Italian study comparing tertiary ALS centers with MDCs to traditional neurology clinics found a higher rate of use of riluzole, feeding tubes, and NIV, fewer hospital admissions, and longer survival in the MDC group (6). A Dutch study of MDCs compared to traditional care demonstrated higher levels of QoL in the domains of social functioning and mental health in MDC users (7). In contrast, one study in southern Italy that reviewed registry data from 1996 to 1998 found that a multidisciplinary approach to care did not improve ALS survival rate (8). The authors of the latter study reasoned that the findings may have been related to the relatively low rate of use of riluzole and the low frequency of use of feeding tubes (6%) and NIV (2.5%) in the MDC patients. Differences in social problem-solving (SPS) skills between attenders and non-attenders of ALS MDCs have not been studied, but are potentially of significance in understanding these patient populations. SPS skills are determined by problem orientation

Correspondence: Z. Simmons, Penn State Hershey Medical Center, Department of Neurology, EC 037, Hershey, PA 17033, USA. Fax: ⫹717 531 0384. E-mail: [email protected] (Received 2 September 2014 ; accepted 29 November 2014 ) ISSN 2167-8421 print/ISSN 2167-9223 online © 2015 Informa Healthcare DOI: 10.3109/21678421.2014.994530

ALS multidisciplinary clinics and behavioral response style. Adaptive SPS skills involve a positive problem orientation (viewing problems as challenges to be overcome) and rational problem solving. Maladaptive SPS skills are characterized by a negative problem orientation (seeing problems as frustrating barriers to successful resolution) and a behavioral response style characterized by avoidance (“ignore it and it will go away”), or by impulsivity and carelessness (making a hasty choice, without considering alternatives) (9). It has been shown that SPS skills of ALS caregivers are an important factor in determining their QoL (10). Symptom management and palliative care for those with ALS necessarily involves problem solving, for both the caregiver and the patient. The value and benefits of MDCs may depend on the health care system and culture in which they exist. There has been no examination in the United States of the differences among ALS patients who attend MDCs and those who do not. Despite the possible benefits of MDCs, many individuals with ALS do not receive care in a MDC setting. We tested three hypotheses regarding attenders and non-attenders of ALS MDCs: • Attenders reported higher QoL. This is an extension of previous studies of QoL and MDC use (7). • Attenders demonstrated better SPS skills. We rationalized that individuals with better SPS skills would be more likely to use MDCs because they consider all of their options and engage others in decision-making. They also may have a more positive problem orientation that leads them to be more optimistic about services and thus more motivated to seek help. • Attenders reported better physical function, based on previous research that showed a survival benefit for MDC users compared to nonusers (6,7).

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for distribution. The ALS Association national office and local chapters posted information about the study in newsletter mailings and website links. Patientslikeme.com is a social networking web site for individuals to connect with others who have the same disease or condition. Patientslikeme.com advertized the study on their website and through direct e-mailing to all registered users with ALS. Methods The survey was hosted on the internet using Surveymonkey.com®. Written notification posted on the survey website provided participants with information regarding the research objectives, risks and benefits, directions for how to complete the survey and a point of contact for the study coordinator for questions or concerns regarding the study. Informed consent was provided on the website by participants before beginning the study survey. Institutional Review Board exempt approval was obtained (IRB Study #31575). Participants completed the ALS Specific Quality of Life Instrument-Revised (ALSSQoL-R), the ALS Functional Rating Scale-Revised (ALSFRS-R), and the Social Problem Solving Inventory Revised Short version (SPSI-R). Demographic information was collected (Table I). Participants were requested to report on their use of medical care specialists, pharmacologic treatments, nutritional and respiratory interventions and services that they used for their care. χ2 tests for categorical variables and t-tests for continuous variables using SPSS V.21 were calculated to determine significant group differences in demographic characteristics at p ⬍ 0.05. In order to compare group differences in QoL and SPS scores, multivariate analysis of variance (MANOVA) tests were calculated. A priori power analysis estimated a required sample size of 210 participants for one-way MANOVA with an effect size of 0.25 and a significance level of α ⫽ 0.05.

Subjects and methods Subjects

Group assignment

Individuals were eligible to participate if they selfidentified as having been diagnosed with ALS by a health care professional, were at least 18 years of age, and acknowledged that they could read and understand the survey (written in American English at a Sixth grade level). Participants were recruited through advertisements distributed by the ALS Association, Patientslikeme.com, and ALS Centers of Excellence. The ALS Association is a national organization with regional and local chapters and support groups throughout the United States. A flyer and letter announcing the research project was sent to all local ALS Association chapters and to all Medical Directors of ALS Centers of Excellence informing them about the study and providing recruitment materials

Respondents to the survey were assigned to one of two groups: MDC attenders or non-attenders. Attenders met one of three criteria: 1) had been to a MDC once and planned to return for care; 2) had been to a MDC more than once and were continuing to receive MDC care; or 3) had been to a MDC more than once but now no longer received MDC care. Non-attenders were those participants who had never been to a MDC or those who attended an ALS Center once for the purpose of a diagnostic visit but not for multidisciplinary care. Instruments The ALS Specific Quality of Life Instrument-Revised. The ALSSQoL-R (11) is an ALS-specific measure

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H. E. Stephens et al. Table I. Demographics and disease characteristics of attenders and non-attenders of multidisciplinary clinics. Demographic or disease characteristic

Attenders Number (%) or Mean (SD)

Non-attenders Number (%) or Mean (SD)

Males Age (yrs) Site of onset

144 (63.4) 57.8 (9.8) Limb 167 (73.2) Bulbar 60 (26.3) Respiratory 1 (0.4) 15 (6.6) 63.54 (61.4) 19.98 (9.94)

38 (59.4) 58.7 (9.9) Limb 53 (82.8) Bulbar 11 (17.2) Respiratory 0 (0) 6 (9.4) 78.43 (96.7) 19.17 (9.53)

Familial ALS duration (mo) ALSFRS-R

p -value 0.553 0.525 0.272

0.456 0.139 0.583

ALSFRS-R: ALS Functional Rating Scale-Revised.

of overall QoL, assessing health-related and nonhealth-related factors. This 46-item questionnaire uses a 0–10 point Likert scale, with 0 being the least desirable situation, and 10 the most desirable. The instrument contains six domains of QoL: Negative Emotion, Interaction with People and the Environment, Intimacy, Religiosity, Physical Symptoms, and Bulbar Function. The total score is divided by 46, and an Average Total Score is obtained that varies from 0 (worst QoL) to 10 (best QoL). Both the original and revised versions have been validated in multicenter studies (11,12). The ALS Functional Rating Scale-Revised. The ALSFRS-R(13) is a widely-used, 12-item, ALS-specific questionnaire assessing physical function in the bulbar, upper limb, lower limb, and respiratory domains that has been shown to be reliable in self-reporting function (14). Each item is scored from 0 (poorest function) to 4 (normal function), and the scores are added to produce a total score from 0 (worst) to 48 (normal). The Social Problem Solving Inventory-Revised Short Version. The SPSI-R(15) is a 25-item, self-report measure of problem solving skills designed to evaluate ability to resolve problems in everyday life. Using a 5-point Likert scale, ranging from “not at all true of me” to “extremely true of me”, the respondent is asked to self-report typical responses to problems. There are five scales, two of which are adaptive dimensions of problem solving (positive problem orientation, rational problem solving), and three of which are maladaptive (negative problem orientation, impulsivity/careless style, avoidance style). Each dimension converts a raw score to a standard score with a mean of 100. Higher scores on the adaptive dimensions indicate potentially more effective SPS skills, whereas higher scores on the maladaptive dimensions indicate potentially ineffective SPS.

Results Data from respondents who indicated that they were from a country other than the United States of America were excluded from the analysis. There

were 231 individuals who self-identified as attenders of a MDC, and 64 who were non-attenders. Seventy-four participants did not answer the question about MDC attendance, and were excluded from analysis. The attenders and non-attenders did not differ with regard to gender distribution, age, site of onset, proportion of familial cases, or duration of illness. Function, as measured by the ALSFRS-R, also did not differ between the groups (Table I). Table II presents the treatments used by attenders and non-attenders of MDCs. Non-attenders more commonly underwent tracheotomy or mechanical ventilation and reported using no treatment for their ALS compared to attenders of MDCs. Attenders used NIV more frequently than non-attenders. All other treatments examined in the study were used with similar frequencies by the two groups. Table III presents the services received by attenders and non-attenders of MDCs. Attenders report receiving more services than non-attenders from a variety of health care providers.

Table II. Treatments used by attenders and non-attenders of multidisciplinary clinics. Treatment

Attenders Non-attenders Number (%) Number (%) p- value

Riluzole 128 (55.4) Antidepressants 100 (43.3) Sialorrhea meds 44 (19.0) Cramp, spasticity meds 75 (32.5) Pain meds 50 (21.6) Sleeping meds 77 (33.3) Constipation Rx 62 (26.8) Urinary urgency Rx 23 (10.0) Experimental meds 37 (16.0) No treatment 8 (3.5) Feeding tube 47 (20.3) Non-invasive ventilation 76 (32.9) TMV 8 (3.5) AAC device 61 (26.4) Power wheelchair 112 (48.5) CAM 73 (31.6)

28 27 12 21 21 15 17 11 6 6 9 12 6 11 30 17

(43.8) (42.2) (18.8) (32.8) (32.8) (23.4) (26.6) (17.2) (9.4) (9.4) (14.1) (18.8) (9.4) (17.2) (46.9) (26.6)

0.098 0.875 0.957 0.958 0.064 0.130 0.965 0.109 0.183 0.049* 0.257 0.029* 0.049* 0.129 0.820 0.438

*Significant; AAC: augmentative and alternative communication; CAM: complementary and alternative medicine; meds: medications; Rx: treatment; TMV: tracheostomy or mechanical ventilation.

ALS multidisciplinary clinics Table III. Services received by attenders and non-attenders of multidisciplinary clinics. Service Neurologist Nurse Respiratory therapist Pulmonologist Physical therapist Occupational therapist Mental health professional Social worker Pastoral care Dietician Speech therapist CAM practitioner In-home care Hospice

Attenders Number (%) 187 106 122 103 177 145

(81.0) (45.9) (52.8) (44.6) (76.6) (62.8)

57 (24.7) 112 36 105 126 37 75 21

(48.5) (15.6) (45.5) (54.5) (16.0) (32.5) (9.1)

Non-attenders Number (%) p -value 55 14 13 20 29 23

(85.9) (21.9) (20.3) (31.3) (45.3) (35.9)

9 (14.1) 15 10 8 24 13 10 5

(23.4) (15.6) (12.5) (37.5) (20.3) (15.6) (7.8)

0.358 0.001* 0.000 * 0.055 0.000 * 0.000 * 0.071 0.000 * 0.994 0.000 * 0.016* 0.418 0.008* 0.750

*Significant; CAM: complementary and alternative medicine.

Table IV summarizes QoL data. Attenders and non-attenders showed no significant differences in their overall QoL scores, or their QoL factor scores except for higher religiosity in non-attenders compared to attenders. Attenders’ and non-attenders’ mean scores on the SPSI-R total score and on the problem orientation and behavioral response subscales were within average range compared to the SPSI-R normative sample (15), and did not differ significantly from one another (Table V). Discussion The study data did not support our hypotheses that those patients who attend a MDC would have higher QoL, better SPS skills, and better physical function than those not attending such clinics, despite the presence of similar demographic and disease characteristics in the two groups. There are a number of possible explanations for this seemingly non-intuitive finding.

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Table IV. Quality of life in attenders and non-attenders of multidisciplinary clinics. Attenders Non-attenders Mean (SD) Mean (SD) p -value

Measure Total QoL Negative emotion Interaction with people and environment Intimacy Religiosity Physical symptoms Bulbar function

6.43 (1.45) 6.24 (1.97) 7.80 (1.60)

6.34 (1.37) 6.15 (2.00) 7.48 (1.68)

0.685 0.773 0.180

5.82 (2.01) 5.28 (3.73) 6.02 (2.04) 6.38 (2.67)

5.49 (2.04) 6.48 (3.54) 5.54 (2.38) 6.48 (2.50)

0.271 0.030* 0.125 0.583

*Significant; QoL: quality of life.

Some differences between attenders and nonattenders that were not recorded in this study may also play a role in the decision to attend a MDC. For example, non-attenders may receive more care from laypersons, or may have stronger psychosocial supports from family and others, making a MDC less needed. Also to be considered is the concept of frame shift (response shift) in maintaining QoL. Individuals with ALS in general have a relatively high overall QoL that does not decline over time (16,17). A response shift may play a major role, whereby individuals with life-threatening illnesses gradually alter their expectations to conform to reality, and experience changes in those factors that they perceive as being important to maintenance of QoL (18). Those who do not attend a MDC may be able to do this without MDC expertise, whereas attenders may find the MDC team necessary for this. Thus, we postulate that patients who benefit from MDCs likely will gravitate toward them and remain in them, whereas those who do not require MDCs to maintain QoL likely will not opt for them, or will stop going. In brief, not everyone with ALS ‘needs’ multidisciplinary care to have a high QoL, but some do. Psychosocial supports and treatments received may be the keys to optimizing global QoL, regardless of whether or not MDCs are used to facilitate such supports and services.

Self-selection and QoL The role of self-selection regarding the decision to attend or not attend a MDC is an important one, and likely plays a major role in explaining the results. Consider the much larger number of services received by attenders: non-attenders may not require physical and occupational therapy services to maintain their QoL because their physicians have instructed them on range of motion exercises and have provided them with assistive and adaptive devices as needed. Alternatively, they may be visited at home by physicians or nurses who make certain they receive the care they need. The lack of differences between attenders and non-attenders in treatments used, despite greater services received by attenders, appears to reflect this.

Table V. Social problem-solving scores of attenders and nonattenders of multidisciplinary clinics. Measure SPSI-R Positive problem orientation Negative problem orientation Rational problem solving Impulsivity/ careless style Avoidant style

Attenders Mean (SD)

Non-attenders Mean (SD)

p -value

14.35 (2.52) 13.23 (3.97)

14.52 (2.76) 13.91 (4.15)

0.653 0.256

4.71 (3.66)

4.22 (4.07)

0.374

12.31 (3.96)

12.08 (4.12)

0.702

4.70 (3.57)

5.13 (3.32)

0.402

4.37 (3.40)

4.01 (3.62)

0.491

SPSI-R: Social problem-solving inventory-revised.

200 H. E. Stephens et al. Defining QoL The results of our study also highlight the challenge of defining QoL, a multifaceted construct that has been measured in multiple ways (1,11). The ALSSQoL-R assesses multiple factors outside the physical domain, including psychological, support, and existential. Many of these domains likely are not modifiable by health treatments and services but are enriched by other broader environmental and social experiences. Consistent with this line of reasoning, studies utilizing the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) to assess patients with ALS have demonstrated that factors related to family and significant others appear to contribute the most to psychosocial well-being, and that religion is a significant contributor much of the time (19). These are contributors to the ALSSQoL-R, and would not be expected to be influenced by attendance or non-attendance at a MDC. Thus, the findings in this study raise the question of whether global QoL instruments such as the ALSSQoL-R are the appropriate tools to measure the effects of interventions, such as a MDC, which impact specific contributors to QoL, and do so in ways that differ substantially from patient to patient. The ALSSQoL-R was designed to assess QoL very broadly. Although it has been validated in ALS, narrower outcome measures may be needed to assess the effects of specific interventions that combine to define the MDC experience. For example, outcome measures of psychological health could be used to determine the effects of mental health interventions on psychological well-being, a decrease in choking episodes and better enjoyment of meals could be used to assess the effect of interventions by a speech therapist on QoL as it relates to eating, etc. Global QoL assessment instruments may be better suited for the assessment of individual QoL in the clinical setting, or for assessments of groups of individuals who are experiencing changes in important psychosocial supports

SPS skills and physical function The lack of differences in SPS skills between groups may reflect sampling bias. The sample, overall, had SPS skills that were within the normal range. Such individuals likely are motivated to seek information, participate in research, and determine whether or not they need MDCs. Those with poor SPS skills may be under-represented in our study. We did not find better physical function in attenders than nonattenders. This likely reflects the equivalent treatments received by the two groups, in contrast to some earlier studies (6,7). Number and intensity of services and treatments have varied from series to series, likely reflecting local and regional treatment patterns (5–8).

Limitations of this study include recruitment strategy and collection of demographic data. The participants in the study self-identified as having ALS. It is possible that the sample may have included individuals with other motor neuron diseases or other neuromuscular disorders. Secondly, we collected a limited set of demographic information. Additional data such as marital status, social supports, insurance status, and socioeconomic status would have been useful to characterize groups or better explain the data. Our sample may not be representative of the ALS patient population as a whole; specifically, those who are not internet users and those not connected to patient care and advocacy organizations such as the ALS Association or Patientslikeme.com likely are under-represented in this study. Average duration of illness is longer than population norms, suggesting that our sample of patients had more slowly progressive disease than ALS patients overall. Internet based studies such as this offer both opportunities and challenges compared to faceto-face interviews. The ability to potentially recruit large numbers of individuals relatively effortlessly from the internet’s worldwide audience is an enormous advantage, and can facilitate including those not seen in a traditional setting such as an ALS clinic, but the individuals completing the questionnaire may be younger, wealthier, and more highlyeducated than the disease group as a whole, and so may not be representative. Responses via a webbased survey may be more honest than those obtained by a personal interview, due to the internet’s anonymity, but participants lack the ability to ask for clarification of potentially confusing questions. As always with the internet, there is far greater opportunity for fraud, such as completing the questionnaire multiple times with different identifiers from multiple computers, and putting in misleading or even ridiculous information that may invalidate the study. The lack of longitudinal data and lack of a control group clearly are limitations of any observational cross-sectional study such as this. Attenders may have had a poorer QoL than nonattenders prior to attending a MDC; alternatively, patients may have experienced a progressive decline in QoL over time that was arrested by attending a MDC. There are other limitations to consider. The MDC status and the responses of the 74 respondents who were excluded from data analysis are not known, and may have changed the study results. The construct of a MDC was not precisely defined. The ALS Association and Muscular Dystrophy Associations have guidelines that ensure some uniformity in care delivered at MDCs, but certainly they are not all identical. There were only 64 non-attenders, raising the possibility of selection bias, and thus possibly influencing the results.

ALS multidisciplinary clinics Conclusions MDCs are not inexpensive. The mean cost per patient per clinic has been calculated at $480 (20). Are they worth it? The high cost of MDCs does not necessarily prevent them from being an efficient use of health care resources for a complex illness such as ALS. They may be more cost-effective than traditional neurology clinics (21). In view of rising societal concerns about the cost of health care, it is important that we develop outcome measures which accurately reflect the contributions of MDCs. Global QoL measures do not appear to be the best instrument for this purpose. To determine the benefits to individuals of MDCs, it may also be useful to track QoL individually, including compliance with recommendations, frequency of MDC attendance, and the effect of each intervention on outcome, as defined by specific outcome measures. Qualitative reports describing reasons why participants attended MDCs will be presented in a separate article, and should provide meaningful insights into the data presented here.

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Acknowledgments This study is derived from work performed by Jared Young as his dissertation study. The authors thank the patients, the ALS Association, Paul Wicks of Patientslikeme.com and the ALS Centers of Excellence for their contributions to this study. This work was supported by the Paul and Harriet Campbell Fund for ALS Research, the ALS Association Greater Philadelphia Chapter, and many other private donations to the Penn State Hershey ALS Center.

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Declaration of interest: The authors report no confl icts of interest. The authors alone are responsible for the content and writing of the paper.

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ALS Multidisciplinary Clinics/20 17.

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Multidisciplinary ALS clinics in the USA: A comparison of those who attend and those who do not.

Optimization of quality of life (QoL) is perceived by many as the primary goal for patients with amyotrophic lateral sclerosis (ALS), often via multid...
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