Correlations Between Quality of Life and Adaptation Factors Among People With Multiple Sclerosis

Adjusted Self-Concept

Like some other devastating diseases (e.g., cancer), MS entails a process of psychological reaction and adjustment that may follow four temporally ordered phases: denial, resistance, affirmation, and integration (Brooks & Matson, 1982). As participants in the narrative inquiry study recognized, coping is a process: “It takes time, I think; you have to go through stages to reach that point” (Cvitanovich et al., 2009, p. 17). Adaptation over time involves not only physical but also psychosocial and spiritual adjustments; values and beliefs, as well as relationships to others and one’s surroundings, all change. During the initial adjustment, one’s identity as an independent adult, worker, and helper may be supplanted by negative self-concepts (Irvine, Davidson, Hoy, & Lowe-Strong, 2009). Accepting the diagnosis and taking action to maintain health and a positive outlook are essential to regaining a sense of well-being (Cvitanovich et al., 2009). The coping process produces a change in self-concept that temporally and metaphorically parallels changes in physical and functional status; namely, the person’s adjusted self-concept embraces the effects of MS. In the preliminary study, participants came to believe that their ability to cope with MS was one of their strengths. They tended to appreciate the small victories achieved from day to day, such as walking with only a cane or making their own breakfast (Cvitanovich et al., 2009).

Social Support

Participants in the narrative inquiry study highly valued the dependability of various social support systems (Cvitanovich et al., 2009). Social support encompasses three basic functions: (1) emotional, (2) instrumental, and (3) informational. Family, friends, and significant others were identified as sources of emotional support (e.g., love and affection) and instrumental support (e.g., helping hands); as 1 participant described it, “My family is like rock. So it’s always going to be like that if I need them” (Cvitanovich et al., 2009, p. 23). Important sources of informational support included health care professionals and, participants strongly agreed, MS peer support groups. Sharing experiential knowledge with others in a similar situation provides group members with strategies for coping more effectively with the stresses imposed by MS. Social support plays an important role throughout the course of MS; not only does it empower people to become more independent, but it also gives them the opportunity to depend on loved ones when necessary. Several studies have identified social support as a predictor of perceived health status, both physical and mental, through its stress-mediating and stress-buffering role (Krokavcova et al., 2008; Mohr, Classen, & Barrera, 2004; Schwartz & Frohner, 2005).

Accessibility

Lack of accessibility hinders the ability of people with MS to move about in the community and ultimately leads to a decrease in productive and social activities. Lack of affordable mobility aids, inaccessible public transportation, and physical barriers limit social interaction and occupational participation and are a factor in the onset of depression; as 1 participant described it, “Being trapped in the house is depressing, I think, for anybody, and it’s hard for people to cope with” (Cvitanovich et al., 2009, p. 25). Access to quality health care, reliable medical information, and institutional support was also a concern for participants in the preliminary narrative study (Cvitanovich et al., 2009, p. 25). They expressed frustration about the ambiguous and deferred diagnostic and treatment information health care professionals provided. Moreover, they described red tape as a barrier to obtaining community resources and institutional supports (e.g., centers for independent living). A few population-based studies that focused on the spectrum of disability in MS have documented the need for enhanced resource accessibility to promote more independent and satisfying community living for people with MS (Gottberg et al., 2008; McDonnell & Hawkins, 2001; Rodriguez et al., 1994).

Design

This research was a correlational study exploring relationships between QoL and three important adaptation factors of people with MS: adjusted self-concept, social support, and accessibility.

Participants

The study sample consisted of 68 community-dwelling adults with MS. Convenience and snowball sampling methods were used to recruit participants through community sites in southern California such as MS peer support groups, service programs by the National Multiple Sclerosis Society, and community-based rehabilitative facilities. Each participant met the following inclusion criteria: a documented diagnosis of MS, ≥ age 18 yr, noninstitutionalized living arrangement, and adequate cognitive and language capabilities to complete a questionnaire in English. People who had other medical diagnoses that may cause further disabling conditions (e.g., cerebrovascular accident, diabetic peripheral neuropathy, major depression) were excluded. We or facility staff screened for all of these recruitment criteria during the initial contact with each prospective participant.

Instrumentation

QoL was measured using the Leeds Multiple Sclerosis Quality of Life scale (LMSQoL; Ford et al., 2001). The LMSQoL is an eight-item disease-specific measure of QoL that addresses tiredness, loneliness, energy, worries about health, family relationships, appearance, attitudes of other people, and the future. Data from the developmental and testing phases of the LMSQoL supported both reliability and validity of the scale (Ford et al., 2001). Good internal consistency (Cronbach’s α = .79) and test–retest reliability (r = .85) were reported. Construct validity was substantiated through its high correlation (r = .83) with the General Well Being Index (Hunt & McKenna, 1992) and relatively low correlation (r = .39) with the Short-Form Health Survey (SF–36) Physical Function scale (Ware & Sherbourne, 1992), confirming that the LMSQoL is a better measure of well-being than of specific physical function in people with MS.

In addition, the unidimensionality of the eight items of the LMSQoL was established through goodness of fit, assessed using the Rasch measurement model (Ford et al., 2001). A 0–3 rating scale (0 = not at all, 1 = sometimes, 2 = quite often, 3 = most of the time) was originally designed for respondents to indicate their experiences during the past 30 days. However, because our study focused on QoL as perceived by participants rather than on time-specific outcomes, the frequency rating scale was modified to a 5-point Likert scale (1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree, 5 = strongly agree).

We developed an 18-item questionnaire that included three MS adaptation scales (Adjusted Self-Concept, Social Support, Accessibility). Each adaptation factor scale consisted of six questions reflecting the relevant thematic findings from the narrative inquiry study. The Adjusted Self-Concept scale explored participants’ psychosocial acceptance of the diagnosis and adjustment to the symptoms and functional limitations of the disease. The Social Support scale measured participants’ use of social support as a means to adjust to the diagnosis and maintain occupational participation. The Accessibility scale assessed participants’ ability to gain access to public places, health care and community services, assistive and mobility devices, transportation, and medical information.

Face validity was taken into consideration during question formation. The questionnaire was piloted through the methods of expert review and field pretesting. Expert review consisted of two occupational therapists who specialized in the field of MS reviewing the questionnaire and providing feedback on the relevance of each question. Subsequently, field pretesting was completed with 3 respondents who had participated in the narrative inquiry study. The respondents were asked to complete the questionnaire and provide feedback on the content and understandability of the questions. As a result of the pilot testing, some subtle changes were made to item wording but not to the essence of the content, to enhance the clarity of the questionnaire. Consistent with the modified LMSQoL, the 5-point Likert scale was used in the questionnaire.

For ease of administration, both the LMSQoL and the three MS adaptation factor scales were formatted into one questionnaire comprising Sections 1 and 2, respectively. Moreover, a demographic section was included to gather information on gender, age, marital status, race, income, and time elapsed since diagnosis. Responses to negatively worded items were reversed for scoring. The possible total score for the LMSQoL ranged from 8 to 40; a higher score indicated a more favorable level of QoL. Similarly, the score range for each of the three MS adaptation factor scales was 6–30; a higher score denoted more attributes of the adaptation factor perceived by the participant.

Procedures

We received approval from the California State University, Dominguez Hills, Institutional Review Board before beginning data collection. We contacted the community sites that offered services and support to people with MS to obtain permission and ask for their assistance in selecting and recruiting participants. In addition, participants were asked to help recruit acquaintances who met the inclusion criteria. Participants received from us or facility staff a packet that contained a cover letter, an informed consent document, the questionnaire along with instructions, and a self-addressed stamped envelope. If it was their preference, participants received and returned the materials by e-mail. We took measures to ensure the confidentiality of participants throughout the procedures.

Data Analysis

Descriptive statistics and frequency analysis were used to summarize participants’ demographics and responses to the questionnaire. Pearson product–moment correlations were used to examine the relationships between the results of the LMSQoL and the three adaptation factor scales. The following cutoffs were used to interpret the strength of the relationships: an r of 0–.20 = a negligible correlation; .20–.40 = a low correlation; .40–.60 = a moderate correlation; .60–.80 = a high correlation, and .80–1.00 = a very high correlation (Tomita, 2006). Cronbach’s α was conducted to determine reliability; according to the commonly accepted rule of thumb, an α of .60–.79 indicates acceptable reliability, and an α of ≥ .80 suggests good reliability (Allen & Yen, 2002). Moreover, one-way analysis of variance (ANOVA) was used to detect group differences in the results on the basis of age and time since diagnosis. The significance level was set at .05. All of the statistical analyses were performed using SPSSPC+ Version 17.0 software (SPSS, Inc., Chicago).

Limitations

The small convenience sample of participants limits the generalizability of this study. As mentioned, a high percentage of the participants were recruited from MS peer support groups; Stuifbergen (1995) found that people with MS who were involved in health-promoting behaviors, including participation in support groups, reported better QoL. Therefore, it is possible that our specific sampling method and source favored the results of the study. In addition, this study did not attend to the distinction among different subtypes of MS; participants were not asked to classify their diagnosis in the questionnaire. Therefore, caution in interpreting the results is warranted because of variations in severity and patterns of progression among the various subtypes of the disease, which may have been mixed in this study.

So as not to impose a heavy burden on participants, we sought to develop a relatively brief but sound questionnaire to measure all the research variables (i.e., QoL, adjusted self-concept, social support, accessibility). Section 1 of the questionnaire (QoL) consisted of the 8-item LMSQoL with a slight modification to the rating scale for the purpose of this study. We hope that this modification to the response categories did not compromise the established psychometric properties of the LMSQoL; our examination of the reliability of this modified LMSQoL showed a slightly higher level of internal consistency than the original version. We developed Section 2 of the questionnaire (three MS adaptation factors) using the themes yielded by the preliminary narrative inquiry study (Cvitanovich et al., 2009). The psychometric properties of the three scales in this section may have been limited, although content validity was initially established during the pilot testing phase, and reliability was confirmed through the analysis of internal consistency. As discussed earlier, some items in the Accessibility scale may not be contextually applicable to all people with MS.

Moreover, because of the nature of a correlational study design, other potentially confounding personal and contextual factors (e.g., culture, socioeconomic status, subtypes of the disease) were not adequately controlled, and most notably, the cause-and-effect relationship and dynamic interaction between each of the adaptation factors and QoL could not be determined conclusively. Future cohort studies using large randomized samples and systematic control and analysis of multiple factors are suggested to strengthen both the validity and the depth of the exploratory findings of this study.

Clinical Implications

Research has consistently demonstrated that QoL is compromised in people with MS (Benito-León et al., 2003; Motl et al., 2009; Motl & Snook, 2008). QoL is a recognized outcome of occupational therapy services (AOTA, 2008). Identifying specific variables associated with QoL can assist occupational therapy practitioners in providing holistic interventions for clients with MS. Practitioners can use the three critical contributors—adjusted self-concept, social support, and accessibility—to examine more closely the client’s process of adjusting to and coping with the disease. The intervention plan should take into consideration potential differences in all the personal and contextual factors that may have an effect on the client’s overall QOL.

Occupational therapy practitioners are uniquely trained to focus on a client’s physical, social, psychological, and cognitive attributes rather than on deficits. Through the therapeutic use of self, they reinforce a positive self-image, reorganize priorities, and provide the client with appropriate means and strategies to achieve self-confidence. In recognition of the importance of social support, occupational therapy practitioners can help people with MS establish the essential skills and resources (e.g., caregiver education, support groups, volunteer experience) to widen their support network. In addition, occupational therapy practitioners use their expertise in advocacy training, assistive technology, and environmental modification to help clients who have MS gain access to the services and tools required for maintaining an optimal level of independence in self-care, work, and leisure.