Operationalisation of quality of life for adults with severe disabilities.

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Journal of Intellectual Disability Research

doi: 10.1111/jir.12204

925 VOLUME

59 PART 10 pp 925–941 OCTOBER 2015

Operationalisation of quality of life for adults with severe disabilities L. E. Gómez,1 B. Arias,2 M. Á. Verdugo,3 M. J. Tassé4 & I. Brown5 1 Department of Psychology, University of Oviedo, Plaza Feijoo, s/n., Oviedo 33003, Spain 2 Department of Psychology, University of Valladolid, Paseo de Belén 1, Campus Miguel Delibes, Valladolid 47011, Spain 3 Institute on Community Integration (INICO), University of Salamanca, Avda. de la Merced, 109-131, Salamanca 37005, Spain 4 Nisonger Center, The Ohio State University, 1581 Dodd Dr, Columbus, OH 43210, USA 5 Faculty of Social Work, University of Toronto, 246 Bloor Street W, Toronto, Ontario M5S 1V4, Canada

Abstract Background The operationalisation of quality of life for people with more severe disabilities has been acknowledged in the published research for more than two decades. This study aims to contribute to our knowledge and understanding of the quality of life of adults with severe disabilities by developing a set of quality of life indicators appropriate to this population using a Delphi method and the eight-domain conceptual model proposed by Schalock & Verdugo (2002). Method The participating panel in the Delphi method included 12 experts who evaluated each proposed item according to four criteria: suitability, importance, observability and sensitivity. Descriptive analyses were used to select the best items in each of the four rounds of this Delphi study, as well as examining the coefficients of concordance that were calculated for the final pool of items. Results The four rounds of the Delphi study resulted in a final pool of 118 items (91 that were considered valid in the first round plus 27 items proposed, reformulated or discussed in the following rounds). Importance and sensitivity were the criteria that received the highest and lowest ratings, respectively,

Correspondence: Ms Laura E. Gómez, Faculty of Psychology, University of Oviedo, Plaza Feijoo, s/n., Oviedo 33003, Spain (e-mail: [email protected]).

but also the ones that had the highest and lowest mean coefficients of concordance. Experts showed the strongest agreement for items related to material well-being, while the weakest was found for items related to personal development. Conclusions This study further contributes to our understanding of how to operationalise and measure quality of life in adults with severe disabilities. The item pool generated may prove helpful in the development of instruments for the measurement of quality of life-related outcomes in this population. Keywords behavioural measurement methods, Delphi, intellectual disability, learning disability, quality of life

Introduction The importance and utility of the concept of quality of life are unquestionable; it is used throughout the world as a sensitising notion and to inform social practices and interventions. The concept of quality of life has become so important in social, health and educational services that it is currently being used to (1) guide the development of person-centred interventions and function as a personal outcome criterion at the microsystem level (e.g. Schalock et al. 2011; Gómez et al. 2012; Claes et al. 2012a; van Loon et al. 2013), (2) inform quality improvement strategies

© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd


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59 PART 10 OCTOBER 2015

926 L. E. Gómez et al. • Quality of life for adults with severe disabilities

at the mesosystem level (e.g. Schalock et al. 2008; McCabe et al. 2009; Schalock & Verdugo 2012, 2013; Gómez et al. 2013; Reinders & Schalock 2014) and (3) guide social policies (e.g. Shogren et al. 2009; Gómez et al. 2013). Since the publication of the Convention on the Rights of Persons with Disabilities (United Nations 2006), although not specifically mentioned, the quality of life construct has been put forward as a useful link between the social rights and the personal lives of people with disabilities (Verdugo et al. 2012; Shippers, Zuna, & Brown, in press), as well as being a useful construct to drive progress towards equity, empowerment and self-determination (Navas et al. 2012). Definitions of the quality of life construct have significantly evolved over the past 30 years, especially in the field of intellectual disability (ID). Today, there is consensus about its multidimensionality and the domains it should encompass (e.g. Felce & Perry 1995; Schalock et al. 2002; Cummins 2005). There is also an international consensus that the concept of quality of life applies equally to people with and without disabilities and that its definition and measurement should be similar for both populations, although it is recognised that appropriate core indicators of quality of life may vary according to culture and to environmental and personal context (Brown & Brown 2005; Lyons 2005; Verdugo et al. 2005; Schalock et al. 2010; Brown et al. 2013). Several models of the dimensions of quality of life are used in ID research (e.g. Felce & Perry 1995; Schalock & Verdugo 2002; Cummins 2005; Gardner & Carran 2005; Petry et al. 2005). In this study, we used the eight-domain model proposed by Schalock & Verdugo (2002) because (1) it is one of the most widely cited and frequently used in the scholarly literature, (2) it has good validity (e.g. Jenaro et al. 2005; Schalock et al. 2005; Gómez et al. 2010; Wang et al. 2010), (3) it is used extensively by Spanish service providers (this study was conducted in Spain) and (4) it has been extended to other types of disabilities (sensory and physical) and in other areas of social and health services such as geriatrics, mental health and substance abuse (De Maeyer et al. 2009; Arias et al. 2010; Gómez 2014). The eight core domains of this quality of life model are as follows: material well-being, physical well-being, emotional well-being, social inclusion, personal relationships, self-determination, personal

development and rights (Schalock & Verdugo 2002). It has been established in the literature on quality of life measurement that domains such as these are not measured directly but rather are operationalised and measured by key indicators (Brown et al. 2013) appropriate to the target population and community quality of life standards (Felce & Perry 1995; Hughes & Hwang 1996). Each domain of quality of life is operationalised as a set of indicators (i.e. perceptual, behavioural and/or conditions). Indicators are typically selected on the basis of a review of the scientific literature and the views of expert panels or stakeholder focus groups. What is important is that the indicators be person-specific as well as are culturally sensitive, relevant to current and future policy issues, useful in quality improvement initiatives and within the control of individuals with disability, their significant others, organisations or government (Schalock et al. 2010). Indicators measure quality of life-related outcomes at the individual level. Quality of life-related outcomes should be evidence based, related to a crossculturally valid quality of life measurement model that can be used for multiple purposes, and valid and reliable (van Loon et al. 2013). Significant progress has been made in developing appropriate quality of life measurement instruments for people with ID. The psychometric properties of the instruments have, however, been questioned (Li et al. 2013). In a recent systematic review, Townsend-White et al. (2012) concluded that there were only six English-language instruments for assessing the quality of life of persons with ID that had acceptable psychometric properties. They also reported that most instruments for assessing quality of life were only suitable for those with high levels of intellectual/ adaptive functioning and that none was specifically designed for use in individuals with challenging behaviours or significant deficits in intellectual and adaptive functioning, co-occurring motor impairments, chronic health issues, sensory impairments or mental health problems. Most quality of life measurement methods that have been developed are applicable to those who are able to communicate their preferences, opinions, perceptions and goals. These measurement instruments have been used for people with more severe disabilities (e.g. Brown et al. 1997), but no specially developed instruments are available. The need for specially



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designed quality of life instruments has been acknowledged in the published ID literature for more than two decades (Borthwick-Duffy 1990; Goode & Hogg 1994; Ouellette-Kuntz & McCreary 1996). There has been some progress in assessing quality of life in people with severe disabilities. OuelletteKuntz & McCreary (1996) developed a definition and measure of quality of life for people with profound ID that focused on quality of care. Lyons (2005) used in-depth qualitative analysis to argue that quality of life can be credibly described for this population. Studies by Petry et al. (2007, 2009) perhaps warrant particular mention. Petry et al. (2007) used the Delphi method to develop a definition of quality of life for persons with significant disabilities and confirmed the five-domain quality of life model proposed by Felce & Perry (1995). Petry et al. (2009) later developed a tool for assessing quality of life in this group, which has been used in Belgium and the Netherlands; they also reported a preliminary analysis of its psychometric properties. In general, however, there is either insufficient data on the psychometric properties of quality of life instruments for this population (Lyons 2005; Vos et al. 2010), or the instruments can only be considered as psychometrically promising (e.g. Ross & Oliver 2003; Petry et al. 2009, 2010). The goal of this study was to contribute to the current knowledge and understanding of quality of life in adults with severe disabilities. More specifically, we sought to develop a set of indicators that would be valid for assessing quality of life in persons with severe disabilities. What we understand by ‘severe disabilities’ are those conditions that, in addition to a diagnosis of ID, make the person’s support needs extensive or pervasive because of the severity of their limitations in intellectual functioning and/or adaptive behaviour, or other significant conditions related to language limitations, significant motor dysfunctions, chronic and pain-related medical conditions, challenging behaviours, sensory impairments or mental health problems. The indicators developed are relevant to those who receive supports and services in any kind of organisation and who are 16 years old or more (not engaged in the education system). We recognised from the outset that such a set of indicators would differ somewhat from one support perspective to another (i.e. indicators identified by professionals, people with disabilities or family members might differ), as well as from one culture to

another. In this first study, we focused on the perspective of professionals in Spain as a beginning point to a broader investigation of valid quality of life indicators.

Method Participants A panel of professional participants, consisting of 12 experts (seven women and five men) from the field of ID, was developed to contribute an expert professional perspective for this study. The experts were selected by incidental sampling on the basis of their professional training, research and/or clinical experience in quality of life and disabilities (i.e. they were actively involved in research on quality of life and the target population and/or were professionals with broad experience in providing supports to the target population). They were selected from a professional network that had been trained on the eight-domain model – all of them were related to the Institute on Community Integration, University of Salamanca – where there are several programmes to train professionals in ID, and especially about quality of life. We strove to ensure that there was diversity in gender, age, years of experience, degrees and job positions. All the experts who were invited to participate in the study were willing to participate and completed all the elements required of the study. The age of the experts ranged from 27 to 53 years (M = 37.9; SD = 7.6). Ten were psychologists, six of whom also occupied a managerial position at an agency providing supports to people with severe disabilities. The two remaining panellists were occupational therapists with extensive experience providing frontline care to the target population. The professional experience of the 12 experts ranged from 3 to 25 years (M = 12.7; SD = 7.3). All the experts were both theory and practice experts (i.e. they were researchers with high academic qualifications as well as professionals with solid clinic experience).

Procedure Overall objectives of the procedure We used a modified Delphi method to develop a pool of indicators valid for assessing quality of life in persons with severe disabilities. Our organisation of



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items was guided by the eight-domain quality of life model proposed by Schalock & Verdugo (2002). We report evidence on the suitability, importance, sensitivity and observability of the proposed items; these criteria were used to select the items best suited to assessing quality of life-related outcomes in each of the eight domains at the individual level for people with severe disabilities. The Delphi method The Delphi method is a means of deriving the consensus opinion of a group of experts in a specific subject area (Dalkey & Helmer 1963). Variations on the Delphi method have been increasingly used since it was first developed, but its main characteristics include the following (Linstone & Turoff 1975; Adler & Ziglio 1996): (1) it provides controlled feedback on individual contributions to information and knowledge; (2) it gives an assessment of the group judgement or view (e.g. statistics on group responses); (3) it offers an opportunity for individuals to revise their views of the subject matter; and (4) the anonymity of individual contributions is guaranteed. The Delphi method involves a panel of experts responding to a series of research questions in an iterative process. In the first round, researchers present the research questions to the expert panel and analyse individual responses. Following this, the experts are asked to review their first-round responses in the light of feedback about responses from the group as a whole and to respond to another set of research questions developed by the research team. The iterative process ends when the experts reach a satisfactory degree of consensus (i.e. meet the criteria for consensus set by the researchers). There is no consensus on the appropriate size of a Delphi expert panel (Hsu & Sandford 2007), although the recommended size usually ranges from 8 to 15. The majority of Delphi studies have used 15–20 respondents (Ludwig 1997), and the number is almost always under 50. Smaller panels have been recommended when the topic is fairly narrow and the professional background of the Delphi experts is homogeneous (Delbecq et al. 1986; Ziglio 1996). The suggestion of one paper, which seems to be both practical and efficient, is that researchers should use the smallest number sufficient to constitute a

representative pool of judgements (Delbecq et al. 1986). Okoli & Pawlowski (2004) pointed out that the Delphi method has the following advantages over traditional surveys: (1) the appropriate Delphi group size is not a function of statistical power but rather of the group dynamics; (2) it produces a higher average response rate, and test–retest reliability is not relevant because it is assumed that the experts will revise their responses; (3) it can be used to provide evidence of construct validity if respondents are asked to consider the interpretation and categorisation of variables; (4) responses are reported to the expert group in an anonymised form; this helps to avoid potential bias in responding and also provides the researchers with the opportunity to ask for clarifications and further qualitative data; (5) non-response and attrition are typically zero or negligible; and (6) it provides richer data because it is an iterative process of refinement based on respondent feedback and consensus. Our modified Delphi method Delphi studies usually divide experts into different panels according to categories related to the research question. For instance, Petry et al. (2007) recruited three groups of experts: theory experts (e.g. researchers and academics), practice experts (e.g. professionals) and experience experts (e.g. consumers or patients). We used only one group, as our focus in this first study was to identify valid quality of life indicators from a professional perspective. Thus, our consultation process was a modified Delphi method. Methods of obtaining the perspective of persons with severe ID need to be explored in more detail in the future. The second main difference between our modified Delphi method and the traditional Delphi method lies in the data analysis techniques. It is usual to assess the concordance among the experts (percentage agreement); instead, we used descriptive analysis to select the best items in every round, as well as examining the coefficients of concordance for the final pool of items: unweighted agreement coefficient BN (Bangdiwala 1987), weighted agreement coefficient BW N (Bangdiwala 1987), reliability index Ir (Perreault & Leigh 1989) and Bennet’s S index (Bennett et al. 1954). Percentage agreement is easy to calculate and is the most commonly used measure of



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inter-respondent reliability; however, it can be misleading as it may be influenced by the number of coding categories and does not take into account the likelihood of chance agreement (Cohen 1960, as cited in Perreault & Leigh 1989). There are also welldocumented and important problems (Brennan & Prediger 1981, as cited in Perreault & Leigh 1989) with Cohen’s kappa (1960, 1968); for instance, it is influenced by the distribution of responses, particularly for extreme distributions, and is therefore considered overly conservative. For these reasons, we used alternative measures of inter-respondent reliability, which, although they have not been used frequently for analysing Delphi method data, may be considered more appropriate to the data than the more commonly used indices (Perreault & Leigh 1989). The Delphi procedure The Delphi method was implemented in Moodle, a free e-learning environment for creating dynamic websites online. The website that we created allowed the experts to log in while preserving their anonymity. Experts were invited to participate in the study by email and were never informed of the identity of the other experts. The website provided instructions for each round, materials (e.g. questionnaire for completion and database of the items to be evaluated), information about where to send their evaluations of the item stems and a forum that could be used to express opinions, ask questions or propose solutions to problems relating to the consultation. Ethics procedures as set out by the participating institutions and organisations were followed, and the standards governing research involving human participants in force in Spain were met. The University of Salamanca research ethics committee also reviewed and approved the study.

Results Delphi method results The first step in the Delphi method consisted of an exhaustive review of published research on quality of life and people with severe disabilities, in order to establish the core indicator categories for each of the eight quality of life domains. The indicators and corresponding items intended to index them were primarily selected from other scales suitable for use

with people with ID (e.g. Petry et al. 2007; van Loon et al. 2008; Verdugo et al. 2010; Gómez et al. 2012; Verdugo et al. 2013a). The review generated a pool of 276 items grouped according to core indicators; the core indicators were in turn assigned to one of the eight quality of life domains. An initial selection of items from this pool was made by four members of the research team who are experts on quality of life and disability; this selection resulted in 152 items, for which there was unanimous agreement on suitability, being put forward for the next step. The pool was further reduced to 120 items (i.e. 15 per domain), and these were reformulated so that they were (1) expressed in the third person, (2) suitable for use with a frequency response scale (i.e. never, sometimes, often and always) and (3) followed all the accepted methodological guidelines for item formulation (e.g. avoidance of ‘no’ and other negative expressions, accessible language and clarity of expression). See Appendix A for examples of items. Round 1 The material for the questionnaire used in the first Delphi round was the 120 items selected to represent the core indicators for the eight quality of life domains. We asked the expert panel to evaluate all items on a 4-point Likert scale (1 = not at all … to 4 = very …) for people with severe disabilities according to four criteria: (1) suitability, the degree to which a specific item was relevant to the domain under which it had been placed; (2) importance, the degree to which the item was essential for assessing that domain for people with severe disabilities; (3) observability, how amenable the item was to thirdparty assessment (i.e. assessment by an external observer such as a professional, caregiver or family member); and (4) sensitivity, the degree to which the score on items could be modified with appropriate support and intervention. Two additional criteria were used to select the items with the highest ratings to go forward to the next round: (1) mean score ≥ 3 and (2) SD < 1 across all suitable criteria. Using these criteria, 91 items (76%) were retained, and 29 items (24%) were rejected. These 91 items have been marked in Appendix A with an asterisk. Table 1 shows the medians, means and SDs of scores on the four criteria (1 to 4 range) for the 120



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Table 1 Descriptive analyses for round 1 by criteria

Suitability Importance Sensitivity Observability

Me

M

SD

N valid items

% valid

N items non-valid

% non-valid

3 4 3.5 4

3.619 3.738 3.354 3.574

0.641 0.464 0.675 0.548

111 116 102 115

92.50 96.67 85.00 95.83

9 4 18 5

7.50 3.33 15.00 4.17

items. It also shows the number and percentage of items retained and rejected according to the two additional criteria. The criterion that produced the lowest scores and resulted in the highest number of rejections was sensitivity; importance attracted the highest ratings and generated the fewest rejections. We also asked the experts to propose up to five new items or core indicators for each quality of life domain. In total, the experts proposed 7 new core indicators and 452 new items, ranging from 49 to 61 items per domain, with more new items suggested for physical well-being and rights than the other domains. Table 2 shows the number and percentage of the 120 items retained and rejected and the number of suggested new core indicators and items by domain. Social inclusion and interpersonal relationships had the highest proportions of rejected items.

items. This produced an initial selection of 11–19 new items for each of the eight domains (Table 3). Adding these to the items retained from round 1 resulted in a pool of 219 items (Table 3). In round 2, the experts assessed whether or not each of the 127 new items should be included (yes/no response format) in the final scale for assessing the quality of life of people with severe disabilities. In view of the large number of new items, the selection criterion adopted was very strict (100% consensus on a new item’s suitability). Twenty-one (17%) of the new items met this criterion. It should be noted that most of the new items attracted positive suitability scores (M = 0.80; SD = 0.17). Only nine items (0.07%) attracted a modal score of 0 (i.e. were considered not adequate by most of the experts). Round 3

Round 2 This round focused on the new items proposed by the experts in the previous round (Ni = 452). The research team eliminated all the proposed items that were considered to duplicate or overlap existing

The third round focused on the 29 items that had been rejected in round 1. Experts were instructed to use the online forum to discuss each of these items with respect to the four separate suitability criteria and were encouraged to provide arguments to convince the other expert panellists that the items

Table 2 Descriptive analyses for round 1 by domain

Self-determination Emotional well-being Physical well-being Material well-being Rights Personal development Social inclusion Interpersonal relationships Total

N valid

% valid

N non-valid

% non-valid

N new items

N new indicators

12 14 11 11 13 13 9 9 91

13.19 15.38 12.09 12.09 14.29 14.29 09.89 09.89 100

4 1 4 4 2 2 6 6 29

13.79 03.45 13.79 13.79 06.90 06.90 20.69 20.69 100

60 59 61 54 56 56 57 49 452

0 1 2 0 2 1 1 0 7



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N valid round 1

N new items

N new indicators

N new items selected

N valid + items selected

100% consensus about new items

12 14 11 11 13 13 9 9 91

60 59 61 54 56 56 57 49 452

0 1 2 0 2 1 1 0 7

15 11 19 19 14 17 16 16 127

27 25 30 30 27 30 25 25 219

3 1 2 3 2 1 3 6 21

were unsuitable. This discussion resulted in agreement on (1) a reformulation of 18 items (62%) to clarify item content, (2) reassignment of four items (14%) to a different domain (all of which had initially been assigned to the social inclusion domain; one was reassigned to emotional well-being, one to personal development and two to interpersonal relationships) and (3) the unsuitability of seven items (24%). Round 4 In this round, the experts were instructed to use the same 4-point scale as before (1 = not at all … to 4 = very …) to rate the 50 items rejected or added during previous rounds (the 29 items rejected in the first round but discussed in the third round and the 21 new items rated suitable in the second round) on the four suitability criteria (suitability, importance, observability and sensitivity). Retention criteria were the same in this round as in round 1: (1) mean score ≥ 3 and (2) SD < 1 across all suitable criteria. Again, the lowest scores were awarded for sensitivity and the highest for importance. Descriptive results are shown in Table 4. Twenty-seven of these 50 items

(54%) met these criteria and were therefore retained (Table 5).

Items in the new instrument The four rounds of the Delphi study resulted in a final pool of 118 items (91 retained from the first round plus 27 items proposed, reformulated or discussed in the following rounds; see Appendix A). These items constituted the pool of items to be included in the new instrument for the assessment of quality of life of persons with severe disabilities. As noted, not all the items might be appropriate for all individuals assessed because, under the descriptive term ‘severe disabilities’, many different conditions might be included. For this reason, a clarification must be included for the items that might not be applicable to some individuals (they are in italics in Appendix A), and we recommend rating them with the maximum score. For example, the item ‘The technical aids that he/she needs have been individually adapted’ should be answered ‘always’ if the person does not need them.

Table 4 Descriptive analyses for round 4 by criteria

Suitability Importance Sensitivity Observability

Me

M

SD

N valid items

% valid

N items non-valid

% non-valid

4 4 3 4

3.602 3.655 3.157 3.522

0.604 0.569 0.764 0.529

43 47 22 43

86 94 44 86

7 3 28 7

14 6 56 14



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N valid

% valid

N nonvalid

% nonvalid

1 2 3 4 3 3 2 9 27

2 4 6 8 6 6 4 18 54

6 1 3 3 1 1 3 5 23

12 2 6 6 2 2 6 10 46

Inter-respondent agreement The final step of the Delphi procedure consisted of measuring agreement among the experts on the suitability of these 118 items. Table 6 presents a set of concordance coefficients for the four criteria (suitability, importance, sensitivity and observability) by domain: unweighted agreement coefficient (Bangdiwala 1987), weighted concordance coefficient (Bangdiwala 1987), reliability index (Perreault & Leigh 1989) and Bennet’s S index (Bennett et al. 1954). The unweighted agreement coefficient (BN) provides a measure of the degree of respondent agreement, taking into account only absolute agreements, while the weighted agreement coefficient

BW N takes into account partial agreements among experts by including a weighted contribution from offdiagonal cells. The reliability index Ir (Perreault & Leigh 1989) does not compare observed agreement with chance agreement; rather, it assumes that there is a real expected agreement level and it takes a parametric statistical approach to estimating this (Neuendorf 2002). Bennett’s S provides a measure of inter-respondent reliability based on expected percentage agreement adjusted according to the number of categories used. All coefficients indicated from fair to substantial agreement among our experts. As shown in Table 6, the importance and sensitivity criteria attracted the highest and lowest scores, respectively; they also produced, respectively, the highest and lowest mean coefficients of concordance. BW N most frequently provided the highest estimate of inter-respondent agreement and Bennett’s S the lowest across criteria and domains. Agreement was strongest for items related to material well-being and weakest for items related to personal development.

Discussion This study endeavoured to develop a set of indicators, from the perspective of disability professionals, that would be useful for assessing the quality of life of people with severe disabilities. The eight-domain model put forward by Schalock & Verdugo (2002),

Table 6 Coefficients of concordance for agreement among experts

Suitability

SD EW PW MW RI PD SI IR M

Importance

Sensitivity

M

Observability

BN

BW N

Ir

S

BN

BW N

Ir

S

BN

BW N

Ir

S

BN

BW N

Ir

S

.455 .659 .629 .655 .742 .520 .467 .603 .591 .656

.649 .877 .853 .871 .968 .729 .656 .828 .804

.614 .762 .748 .758 .821 .665 .626 .732 .716

.377 .580 .559 .574 .674 .442 .392 .535 .517

.594 .738 .648 .749 .687 .576 .647 .576 .652 .728

.820 .982 .888 .984 .932 .818 .879 .818 .890

.723 .829 .772 .833 .796 .734 .768 .729 .773

.522 .687 .596 .693 .633 .538 .589 .531 .599

.199 .316 .265 .312 .476 .167 .178 .269 .273 .385

.415 .536 .495 .549 .705 .375 .386 .464 .491

.453 .557 .536 .569 .664 .405 .420 .475 .510

.205 .310 .287 .324 .441 .164 .176 .226 .267

.500 .387 .614 .648 .337 .337 .580 .481 .486 .583

.736 .614 .844 .891 .536 .573 .824 .695 .714

.685 .636 .740 .785 .558 .581 .742 .659 .673

.469 .404 .548 .616 .312 .338 .551 .434 .459

.526 .617 .626 .676 .643 .498 .555 .566 .526

BN, unweighted agreement coefficient (Bangdiwala 1987); BW N , weighted concordance coefficient; Ir, reliability index (Perreault & Leigh 1989); S, Bennet’s S index (Bennett et al. 1954); SD, self-determination; EW, emotional well-being; PW, physical well-being; MW, material wellbeing; RI, rights; PD, personal development; SI, social inclusion; IR, interpersonal relationships; M, mean.



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which is widely recognised in the literature on quality of life and ID, was used as a conceptual framework for the indicators. We implemented a four-round modified Delphi method that generated a final pool of 118 items representing each of the eight domains. This method, which included qualitative and quantitative expert ratings of suitability, importance, sensitivity and observability of the items selected – along with our analysis of inter-respondent agreement – provides a strong rationale for the credibility of the indicators. This is particularly important for assessing social constructs such as quality of life that cannot be measured directly but need to be measured indirectly by indicators (Brown et al. 2013). The pool of items developed by this modified Delphi method allows us to operationalise quality of life specifically for an adult population that has often been overlooked, perhaps because of the measurement challenge that it presents. These challenges have sometimes been met by assuming that indicators can be responded to variously in ways that are appropriate to the developmental level of the respondent, by using qualitative as well as quantitative methods (Lyons 2005) or by focusing on quality of care rather than on aspects of a person’s life (Ouellette-Kuntz & McCreary 1996). Each of these approaches has its advantages and disadvantages, and the set of indicators developed here provides an additional option to the challenge of accurately assessing the quality of life for this population. In developing this pool of items, we have not addressed the additional challenge of who should respond to them when collecting data. Proxies – people who know those with severe disabilities well – have been used in past research, but the degree to which proxies rate quality of life indicator scales accurately has been strongly questioned in the quality of life and ID literature (see Lyons 2005, for a summary). Some studies have found agreement between the person with disability and proxies in quality of life assessments, and low correlations have been suggested to result from differences in the knowledge of the assessor (Schmidt et al. 2010; Claes et al. 2012b); however, others have found no agreement or very low agreement between the person and proxies (e.g. Lyons 2005; Zimmermann & Endermann 2008; Balboni et al. 2013). In one large-sample study in Canada (Brown et al. 1997),

ratings of quality of life indicators by people with disabilities and ratings on the same indicators by proxies did not correlate to a statiscally significant degree. The question, then, of how to obtain the most valid data using the indicators developed in this study is one that will need to be explored further in the future. The validity of this pool of items, using proxies, has already been field tested in a sample of 1770 adults with ID and extensive or pervasive support needs in various Spanish counties (Verdugo et al. 2014). The reliability of the items in this sample was calculated in terms of the corrected homogeneity index (CHI) among other measures. Only five items had a CHI score below .200: i20 and i22 (emotional well-being), i61 and i71 (rights) and i54 (material well-being); these items were deleted from the final version of the instrument: San Martín Scale (Verdugo et al. 2013b). Only five items in the pool of 120 had negative valence, and four of these had CHI scores of less than .200 and were already considered for deletion (i20, i22, i61 and i71). From this, we concluded that those with a negative valence were harder for respondents to understand. With regard to the remaining negative valence item, i54: ‘his/her housing is adapted to persons with limited mobility and to wheelchair user’, the main problem seemed to be that most of the participants neither needed nor had such adaptations and thus there was very little variability in scores on this item. Also, the fit of data obtained using this instrument to the eight-domain model was assessed with confirmatory factor analysis; this indicated that the items tapped the intended domains and that eight domains of quality of life could be distinguished. Verdugo et al. (2014) provided more evidence of the suitability and importance of the pool of items than we have presented here, but further evidence on the sensitivity and observability of the items is needed; this is particularly important in view of the fact that in our pool of items, these criteria generated the lowest scores and weakest concordance. Further research should first check the observability of the items by assessing inter-rater reliability (i.e. compare the responses of two independent observers) and then evaluate the sensitivity of the items to significant changes arising from interventions and provision of support designed to improve quality of life-related outcomes through longitudinal studies.



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Our modified Delphi consultation deliberately focused on the professional perspective, and our panel did not seek in this study to include individuals with disabilities, their family members or other perspectives. Obtaining the perspective of people with severe disabilities involves significant challenges: their limited ability to comprehend and express abstract and complex concepts means that it would have been extremely difficult to include them in the Delphi procedure; other methods would in all probability have to be used. Still, it is recognised that other perspectives might differ from the one generated by the participants in this study, and thus, it would be a useful next step to compare this pool of items with the responses of a sample of parents, siblings or other family members of persons with severe disabilities, as well as with the observed quality of life priorities of people with severe disabilities. Future studies might further examine the validity of this pool of items using such input, as well as developing additional reliable, user-friendly strategies for evaluating quality of life core indicators that are important for those individuals with significant disabilities who have limited ability to express themselves. This study contributes to our understanding of quality of life for adults with severe disabilities and provides a further method for assessing it. The item pool generated may prove helpful in the development of instruments for the measurement of quality of liferelated outcomes in this population. A similar method could be used to generate other potential quality of life indicators that might be important in other cultures because, although quality of life domains seems to be universal, indicators have a tendency to be culture bound (Schalock et al. 2005). We believe that this research represents a necessary first step in the assessment of quality of life-related outcomes at the individual level, something that is vital to the development of person-centred support programmes and evidence-based interventions to improve quality of life for people with severe disabilities.

Acknowledgements This study was supported in part with funding from Fundación Obra San Martín (Santander, Spain) and the Spanish Ministry of Economy and Competitiveness (R&D Projects, 2012) (PSI2012-33139 and PSI2012-

36278). The authors would like to thank the organisations, people with intellectual disability, professionals and families for completing the questionnaires and FEAPS for its support on this project.

Conflict of interest The manuscript has not been published elsewhere, is not currently submitted elsewhere and is significantly different from other manuscripts that have been submitted elsewhere. Ethics procedures have been followed, and the standards governing research involving human participants in force in Spain have been met. There is not any financial or any other kind of conflicts of interest for the authors of this manuscript. Neither the funding bodies of this research have imposed any restrictions on free access to or publication of these research data. Its publication is approved by all authors and by the responsible authorities where the work was carried out. If accepted, it will not be published elsewhere including electronically in the same form, in English or in any other language, without the written consent of the copyright holder.

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Accepted 22 April 2015



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Appendix A:

18

Self-determination

19

1 2 3 4 5

6 7

8 9 10

11

12

Persons providing him or her supports take into account his or her preferences and choices.* He or she participates in the development of his or her individual support plan.* The staff respects his or her decisions.* He or she chooses how to spend his or her free time. Specific measures are taken to allow him or her to influence his or her environment (i.e. physical, material and social environment).* Specific measures are taken to allow him or her to make choices.* He or she has opportunities to refuse to do things that are irrelevant to his or her health (e.g. to participate in a leisure activity, to go to bed to a specific time and to wear clothes that other people choose for him or her).* He or she chooses the meal or part of the meal when there is variety in all courses.* He or she decorates his or her bedroom to his or her liking. Provided supports take into account his or her needs, wishes and preferences (e.g. persons providing supports, being alone or with other people, time and daily routines).* The decision to carry out an action is considered carefully when he or she experiences it as unpleasant (e.g. during personal care, meals and activities).* He or she has a daily programme with activities that reflect his or her preferences.*

20 21

22 23

24 25 26 27 28

Physical well-being 29

Emotional well-being 13

14

15 16

17

Persons providing him or her supports have a list of observable behaviours expressing his or her emotional states (e.g. maps and records). He or she is informed in advance about changes in the staff that provides supports to him or her (e.g. due to shifts, sick leaves and holidays). The staff talks negatively about the person in his or her presence.* Persons providing him or her supports know his or her individual expressions of emotional well-being. * Persons providing him or her supports know his or her individual expressions of distress.*

Persons providing him or her supports know how he or she expresses wishes.* Persons providing him or her supports pay attention to his or her facial expressions, look, direction of eye gaze, tone/volume of voice, muscular tension, body position, movements and physiological reactions. * He or she is nervous or restless.* He or she has a personal record that indicates what he or she likes, what calms him or her down, what he or she dislikes and how he or she can react, that all the staff knows and must follow.* He or she has challenging behaviours (e.g. selfinjurious behaviours and aggression to others).* Specific guidelines and advice are provided to him or her in order to help him or her to control his or her behaviours. Persons providing him or her supports have training on positive behaviour support skills.* Specific measures are taken to prevent or treat mental health-related problems.* Adequate affection and physical contact are provided when he or she needs them.* Specific measures are taken to optimise the group environment where he or she lives in.* Specific measures are taken to make his or her environment recognisable and predictable (e.g. spaces, timings, people providing supports and activities).*

30

31 32 33

34 35

He or she has a diet that is adapted to his or her characteristics and needs. He or she engages in physical activities and exercises that are adequate to his or her characteristics and needs. He or she receives supports that guarantee an adequate posture comfort. He or she has the recommended quantity of food and liquids to maintain a good state of health.* In the service that he or she attends, they take care in the preparation and presentation of meals (e.g. balanced, taste, variety and temperature).* The use of medication is reviewed periodically (e.g. dosage, frequency, effectiveness and side effects).* Persons providing him or her supports have specific training on his or her specific health-related issues.*



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36

37 38

39 40 41

42

He or she has adequate hygiene (e.g. teeth, hair, nails and body) and personal image (e.g. age-adequate clothing style and situationadequate clothing).* He or she is active in different spaces (i.e. indoors and outdoors).* Specific measures are taken to prevent or treat problems derived from physical disabilities (e.g. spasticity, stiffness and limitations).* Specific measures related to his or her mobility are followed to enhance his or her independence.* Specific measures are taken to prevent or treat pain.* Special attention is provided to the diagnosis and treatment of sensory disabilities that he or she might have.* Persons providing him or her supports give advice and support regarding his or her sexuality.*

Material well-being 43 44 45

46 47 48 49 50

51

52 53

54 55

He or she receives all the financial benefits that he or she is entitled to. His or her personal stuff is replaced or fixed when it deteriorates or gets damaged. His or her housing has furnishings adequately suited to his or her physical characteristics (e.g. special armchairs, rocking chairs and mats). He or she has a physical space where his or her personal belongings are within reach. The technical aids that he or she needs have been individually adapted.* The effect of technical aids in the functioning and behaviour of the persons is assessed.* He or she has the technical aids that he or she needs.* Persons providing him or her supports understand the alternative communication systems that he or she needs.* He or she has his or her own things to entertain himself or herself (e.g. games, magazines, music and TV).* He or she has the material goods that he or she needs.* He or she has the key or free access to his or her bedroom, wardrobe and personal belongings.* His or her housing is adapted to persons with limited mobility and to wheelchair users.* Specific measures are taken to adapt the

56

57

environment where he or she lives to his or her abilities and limitations (i.e. sensory, cognitive, behavioural and physical).* Specific measures are taken to adapt the environment where he or she lives to his or her wishes and preferences.* Specific measures are taken in his or her housing to avoid risks such as blows, falls and escapes.*

Rights 58

59

60

61 62

63 64 65

66 67 68

69 70

Persons providing him or her supports have specific training on ethics and respect for persons with disabilities rights. In the service that he or she attends, the person and his or her legal guardian are informed about the application of physical and mechanical restraint measures if needed. Persons providing him or her supports treat him or her with respect (e.g. talk to him or her in a respectful tone, do not infantilise him or her, use positive terms, avoid negative comments in public and avoid talking about the person as if he or she were not present).* He or she is exposed to exploitation, violence, abuse or neglect.* In the service that he or she attends, his or her rights are respected (e.g. confidentiality and information on his or her rights as service consumers).* The service that he or she attends has the legal authorisation to use physical restraints if needed.* He or she knows and understands his or her individually adapted book of rights.* The service that he or she attends respects his or her privacy (e.g. knock before entering, close the door when he or she is having a shower, when he or she goes to the toilet or when change his or her diapers).* The service that he or she attends has a room where he or she can be alone if he or she wants.* All his or her required personal documentation, benefits and assessments are in order.* Specific measures are taken to respect his or her privacy (e.g. during personal care and hygiene and in relation to confidential information).* He or she is treated with respect in his or her environment. In the service that he or she attends, his or her belongings and right to property are respected.*



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71 72 73

Other persons take or touch his or her things without permission.* In the service that he or she attends, his or her rights are respected.* The service that he or she attends keeps his or her personal information private (e.g. photos and life stories).*

Personal development 74

75

76

77 78 79 80

81 82

83 84 85 86

87

Persons providing him or her supports have data about his or her developmental potential in different areas (e.g. social, emotional, motor and cognitive). He or she has a plan of activities that he or she likes and that contributes to his or her personal enrichment. He or she receives individualised supports and attention (e.g. during the personal care, meals, activities, therapies, stimulation, breaks and outside the service).* The activities that he or she does enable him or her to learn new skills.* He or she is taught things that are interesting to him or her.* He or she learns things that help him or her to be more independent.* In the service that he or she attends, instructions and modelling are provided so that he or she learns new things.* In the service that he or she attends, opportunities to demonstrate his or her skills are provided.* He or she has developed new skills in the last 2 years (e.g. related to motor, sensory, social, emotional, intellectual, communicative or personality development).* He or she has opportunities to develop activities independently.* Specific measures are taken to maintain his or her capabilities and skills.* Specific measures are taken to teach him or her new skills. He or she shows motivation while carrying out some of his or her activities (e.g. by going to the door, staff or group when they start).* His or her development in different areas is stimulated (e.g. cognitive, social, sensory,

88

89

emotional and motor).* In the service that he or she attends, when trying to improve his or her development, respect for his or her personal needs and preferences is shown (e.g. avoiding understimulation and overstimulation).* He or she acquires new skills or experiences through his or her involvement in activities.*

Social inclusion 90

He or she has opportunities to go to other environments, different from the place where he or she lives (i.e. travelling, making trips and tourist routes). 91 He or she enjoys holidays in inclusive environments (e.g. hotel, park, country house, beach, mountain, spa and theme park). 92 He or she has a plan of individualised supports that all the staff knows and must carry out.* 93 He or she participates in activities outside the service with persons outside his or her support context.* 94 He or she participates in inclusive activities that are suited to his or her physical and cognitive conditions.* 95 He or she participates in inclusive activities that are interesting to him or her.* 96 The activities in which he or she participates take into account the leisure and cultural facilities in the area.* 97 Specific measures are taken to offer as much variety in activities as possible (e.g. new activities depending on person’s preferences).* 98 He or she participates in social activities outside the place where he or she receives services or supports.* 99 Specific measures are taken to engage him or her in community activities.* 100 He or she uses community environments (e.g. restaurants, cafes, libraries, swimming pools, theatres, cinemas, parks and beaches).*

Interpersonal relations 101

Persons providing him or her supports know the communication system that he or she uses.



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102

103 104

105

106

107

108

109

In the service that he or she attends, the best ways to communicate information to him or her (i.e. visual, tactile, auditory, olfactory and taste) are identified. He or she uses alternative communicative systems if needed. In the service that he or she attends, activities to facilitate personal interactions with other people with intellectual disability are planned. In the service that he or she attends, information about his or her interactive style when he or she meets someone new is provided. He or she celebrates events that are important to him or her and his or her significant persons (e.g. birthdays and anniversaries). In the service that he or she attends, activities or supports that enable him or her to maintain social interactions are planned. He or she has social interactions with other persons beyond his or her supporting context (e.g. friends, acquaintances and neighbours). He or she maintains good relationships with

110

111 112

113 114 115 116 117

118

other people with intellectual disability (i.e. interpersonal exchanges that are pleasant to him or her). In the service that he or she attends, time enough for him or her to answer is provided during interactions.* When he or she exhibits a specific behaviour, its meaning is carefully analysed.* Persons providing him or her supports check to make sure if he or she understands them correctly by analysing his or her reactions.* Specific measures are taken to improve his or her communication skills.* He or she has opportunities to be alone with his or her friends and acquaintances.* He or she has opportunities to meet persons outside his or her supporting context.* Specific measures are taken to maintain and extend his or her social networks.* Opportunities for his or her family to participate in his or her daily activities are provided when both parties wish to do so.* He or she can keep contact with his or her family to the extent that he or she wants to.*


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Quality of life in adults with strabismus.

Familiarizing New Staff for Working with Adults with Severe Disabilities: a Case for Relationship Building.

Dental esthetics and quality of life in adults with severe malocclusion before and after treatment.

National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities.

Developing an item bank to measure economic quality of life for individuals with disabilities.

Quality of life indicators for individuals with intellectual disabilities: extending current practice.

Transition outcomes for young adults with disabilities.

Driving for adults with acquired physical disabilities.

Severe asthma and quality of life.

Quality of life of Taiwanese adults with autism spectrum disorder.

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Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities.

Quality of life in adults with congenital heart disease.

Quality of life in adults treated in infancy for hydrocephalus.

Specific standards of care for adults with intellectual disabilities.

Obesity and symptoms and quality of life indicators of individuals with disabilities.

Impact of Organized Sports on Activity, Participation, and Quality of Life in People With Neurologic Disabilities.

Correlates of a Single-Item Quality-of-Life Measure in People Aging with Disabilities.

Social networks of people with mild intellectual disabilities: characteristics, satisfaction, wishes and quality of life.

Health-related quality of life of children with physical disabilities: a longitudinal study.

Making music, making friends: Long-term music therapy with young adults with severe learning disabilities.

Effectiveness of a life story work program on older adults with intellectual disabilities.

Racial Differences in Chronic Pain and Quality of Life among Adolescents and Young Adults with Moderate or Severe Hemophilia.