Top 10 needs of people with multiple sclerosis and their significant others.

Abstract: The purpose of this study was to identify the needs of patients with multiple sclerosis (MS) and their significant others. A quantitative questionnaire, developed from focus groups and consisting of 75 needs statements, was administered to 353 MS patients and 240 significant others. Analysis

produced rankings of the 10 most important needs of both groups. Rankings by the MS patients and significant others were similar. Three themes emerged. Psychosocial and other personal needs (relationship with physicians, the MS healthcare team, family, and friends) were ranked with high frequency. Information needs (information regarding MS or available support) and financial security were also ranked as important. The data validate the importance of interdisciplinary care for the MS population.

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Multiple sclerosis (MS) is a chronic neurological disease with no known cure. Various symptom-management strategies are available to people living with MS; treatment with interferons or copolymer acetate shows modest results. MS does not significantly affect mortality, but the disease can have a significant impact on quality of life (Ford, Gerry, Johnson, and Tennant, 2001). As people with MS and their significant others negotiate life with a chronic, unpredictable illness, they often turn to hospital- and community-based services for assistance.

The MS Clinic in London, ON, Canada, is an interdisciplinary outpatient clinic based in an acute-care, university-affiliated, hospital setting. A needs-assessment survey was conducted by the MS Clinic to develop an effective and efficient plan of care for MS patients and their significant others through better understanding their needs.

The purpose of this study was to identify the needs of individuals with MS and their significant others by using a patient-derived needs-assessment questionnaire. The study was set in the framework of patient-centered care (Gerteis, Edgman-Levitan, Daley, and Delbanco, 1993). The information obtained was used to examine and enhance clinic-based care. This article focuses on the 10 most important needs identified by individuals living with MS who attended the MS Clinic and by their significant others. The psychosocial needs of this study population are published in a separate journal article (Benbow & Koopman, 2003).

Background

Physical, health, psychological, accessibility, financial, employment or leisure, and information needs and MS were searched independently in the databases. These needs were identified as key issues in a previous study (Koopman, 2003). This search identified several studies that focused on the needs of people with MS and their significant others. In the first study, Black, Grant, Lapsley, and Rawson (1994) examined the service needs of 1,143 MS patients. The service needs the patients identified were respite care, family support, support from others with MS and education, and counseling about MS for the family. In a second study, Sato, Ricks, and Watkins (1996) looked at MS caregivers. The caregivers reported needs related to role function, practical needs (e.g., meal preparation, finances, assistance with child care, household duties), learning about the disease process, and receiving practical training in caregiving. An opportunity to be heard and understood was also deemed important in this study. In an Australian study, researchers noted that caregivers requested practical support (such as respite and home support services) rather than information to help reduce their burden (Wollin, Reiher, Spencer, Madl, & Nutter, 1999). In a study by Wollin et al. (1999), researchers concluded that care should be carefully planned and structured on the basis of these identified needs. Finally, a systematic review of the study of needs in MS caregivers (N = 24) was performed by McKeown, Porter-Armstrong, and Baxter (2003). This review recommended further studies in the area of caregiver needs, in particular the development of reliable and valid disease-specific caregiver assessment instruments.

A Canadian study surveyed MS patients (N = 697) and their caregivers (N = 345) in Ontario by using self-completed mailed questionnaires (Aronson, Cleghorn, & Goldenberg, 1996). Respondents ranked the services of a doctor, physical and occupational therapists, home modification, and nursing care as important. This study recommended awareness of the use of services and the assistance available to the population served. Although patients and significant others who attended the MS Clinic may have participated in this research study, it was not possible to extrapolate these data.

Most MS needs-assessment studies rely on an investigator-developed self-report questionnaire format that assumes the researcher understands the needs to be investigated. Although needs-assessment tools have been developed through the use of focus-group methodology with other patient populations, similar studies could not be found in the MS literature (Buckley, Vacek, & Cooper, 1990). Therefore, a survey questionnaire was developed on the basis of patient-identified needs by using focus-group methodology.

Methods

Overview

A survey of individuals with MS and their significant others (SOs) was conducted at a large, university-affiliated hospital in London, ON, Canada, in 1998. A quantitative questionnaire (MS survey) was sent to 500 people who were randomly selected from the MS Clinic's database of 5,000 patients. Questionnaires were sent to another sample of 500 MS patients who were randomly selected from the same database with a request that they ask their significant other to complete the questionnaire (SO survey). All participants were selected independent of one another to ensure that data would not be biased by discussions between the MS patient and significant other. Data would then reflect the needs of the individual groups (MS and SO). The clinic nurse practitioner reviewed the randomly selected patient list to exclude those who were cognitively impaired or unable to read and comprehend English.

The needs assessment was conducted in two phases: focus-group phase (to develop a questionnaire) and survey phase.

Survey Development

To develop a needs survey questionnaire, four focus groups, including MS patients (N = 10) and significant others (N = 5), were facilitated by an individual unknown to the participants, thereby reducing any bias that might occur because of the presence of the researcher (Koopman, 2003).

The investigators obtained approval for the study from the Research Ethics Board for Health Sciences Research Involving Human Subjects at the University of Western Ontario.

A needs survey questionnaire was developed from focus-group data (Koopman, 2003). Patients and interdisciplinary team members reviewed the needs statements to determine the validity of the content. A pilot test of the questionnaire with patients and significant others did not indicate the need for revisions. Words and phrases used by focus-group participants were retained in the original form to the greatest extent possible. Interdisciplinary team members, including neurologists, physiotherapists, occupational therapists, nurses, and research assistants, did not identify any additional needs as perceived by their respective disciplines.

The needs survey questionnaire was similar for MS patients and significant others. A total of 75 needs statements were developed under seven categories (Table 1): physical (6), health (16), psychological (23), accessibility (4), financial (5), employment/leisure (9), and information (12). Respondents were asked to rank the needs statements according to level of importance on a four-point, Likert-type scale from 1 (not important) to 4 (very important) or not applicable. An open-ended question concluded each needs category; it asked respondents (a) "What other needs do you have?" and (b) "Is the need met with the help of spouse, friends, healthcare workers, etc.?" The purpose of this question was to identify needs that were not included in the questionnaire. This portion of the questionnaire was not consistently completed, possibly because of a flaw in the development of the questionnaire or because participants felt that all of their needs had been identified. Data from this portion of the questionnaire are not reported here. The Cronbach's alpha coefficient of the needs assessment was 0.87 for the MS patients, and 0.85 for the SOs.

On the survey, participants were also asked to complete a multiple-choice personal characteristics data form. Data from MS participants included demographic variables, type of housing, living arrangements, employment status, size of community, year of MS diagnosis, current disease course, and mobility level. Data from the SO participants included demographics, relationship, proximity to the MS patient, size of community, and employment status. Information regarding the MS patient obtained from the significant other included year of MS diagnosis, current disease course, and mobility level.

Survey Administration

Participants were selected as described above. People who attended the focus groups may have been randomly selected to complete the needs survey. Each participant received a letter via mail that explained the study, along with the questionnaire and a stamped, addressed envelope. A reminder postcard was sent to all participants 6 weeks after the initial mailing. Consent to participate was assumed if a completed questionnaire was returned. A summary of results was sent to participants who completed a separate form that indicated they would like to receive the findings.

Data Analysis

Differences between the needs of MS patients, and significant others were compared by using descriptive statistics for means (Student's t test), and proportions (chi-square test). Data were analyzed using the Statistical Package for the Social Sciences (Version 10 for Windows).

Results

The questionnaire was returned by 353 MS patients (71%) and 240 significant others (48%). The sample was demographically representative of the general MS population (Table 2):

* 243 (70%) of the MS respondents were women ranging in age from 30 to 60 years

* 240 (70%) were married, living at home, and living with a spouse

* 190 (56%) of the MS respondents described their disease course as either stable or relapsing/remitting, with 149 (44%) describing their disease course as progressive

* 147 (62%) of the significant others were males ranging in age from 30 to 60 years

* 203 (85%) identified the person with MS as their spouse.

For data analysis, the rankings of important and very important were combined. The top 10 needs as identified by the MS patients and significant others are listed in Table 3 and Table 4, respectively. Both groups identified the same priority of needs with few exceptions. Three themes emerged in the top 10 needs of the MS and SO respondents: psychological needs, interpersonal needs, and information needs. Seven of the top 10 needs for both the MS and SO respondents were psychosocial needs.

The psychological needs identified within the top 10 needs for both people with MS and significant others of people with MS were to maintain control in one's life, feel productive, have a sense of financial security, and plan for the future. There were no significant differences between the rankings of these needs for the MS and SO groups (Benbow & Koopman, 2003).

Needs in relationship to the MS healthcare team, community healthcare supports, and family/friends were identified in the top 10 needs statements. Both the MS and the SO groups identified these needs: to know that their doctors and individual MS team members are interested; that they have a supportive family doctor; and that they have the support of family and friends.

One hundred ninety-five (81%) of SO respondents ranked receipt of information about services offered by the MS Clinic as number 9 among the top 10 needs (Table 4). MS respondents ranked this need as number 14, but the difference in ranking was not statistically significant (p = .07).

Significant differences in the ranking of the top 10 needs between the MS and SO groups were found. While 283 MS respondents (80%) ranked the need to know that individual MS team members were interested as number 7 within the top 10 needs, 219 (91%) of SO respondents ranked this need as number 3 within the top 10 needs (p = .05). The need to receive regular newsletters from the MS clinic was ranked as number 5 by 285 (80%) of MS patients, whereas 209 (87%) of the SO respondents ranked this as important (number 6). The difference in the ranking of this need between the MS and the SO respondents (p < .0001) is statistically significant.

Discussion

Studies investigating the needs of patients and caregivers can be found in the literature. Cancer and stroke care researchers have produced several studies of patient needs (Bakas, Austin, Okonkwo, Lewis, & Chadwick, 2002; Deeken, Taylor, Mangan, Yabroff, & Ingham, 2003; Hileman, Lackey, & Hassanein, 1992; Nikoletti, Kristjanson, Tataryn, McPhee, & Burt, 2003; Pierce, Gordon, & Steiner, 2004; 2003; Silveira & Winstead-Fry, 1997). The current study is unique in relation to previous MS needs studies because the focus-group data were used to develop the needs-assessment questionnaire. Most of the previous MS studies focused on identifying the needs of the caregiver or patient, using separate and often diverse instruments, whereas this survey used the same instrument for both the MS and SO populations, which allowed for comparison of the top 10 needs between the MS and SO respondents. The results of this study suggest that people living with MS and their significant others have similar needs. This study supports care currently provided in many interdisciplinary MS clinics across Canada, and suggests that, for the most part, separate services for MS and SO populations are unnecessary. The needs identified by the MS and SO respondents in this study do not pose a significant challenge to MS care teams and community support organizations in providing services. The key finding in this study is that psychological and psychosocial care is an essential service for the MS population.

A need of significant others of MS patients identified in this study was to have access to MS care providers (Table 4). Involving the significant other in MS care by encouraging their attendance at clinic appointments, and consistently assessing patients' and caregivers' needs, will enhance the provision of services to this population. These findings are similar to those identified by McKeown et al. (2003).

One need that differed between MS and SO respondents was about information. It would be interesting to explore this difference further in future studies. Information from such studies could impact the planning and provision of education resources in MS clinics.

This study was conducted at one university-affiliated outpatient clinic with a clinic-specific population. The results, therefore, cannot be generalized to the overall MS population. The study results are interpreted for one point in time and no follow-up studies have been performed. Unfortunately, few individuals answered the question regarding who was meeting their needs. It is not clear whether clinic services are required to meet these needs or whether these needs could be met in the community. Further research on how individuals would prefer that their needs be met is recommended. The needs that patients expect to be met by the MS Clinic team also require examination. A better knowledge of those needs and expectations could help clinic staff build on the patient-centered care they provide. On a different level, future research could study healthcare provider perceptions of needs versus MS and SO perceptions to determine if they are similar.

The survey results were not a surprise to the investigators. Rather, the resulting list of top 10 needs validated the beliefs of the investigators with respect to their identification of needs in the patient population. The prevalence of psychosocial needs within the top 10 rankings validated the current interdisciplinary approach to MS care and may be valuable data in advocating for the continuation of such care during times of cutbacks and change within the healthcare system. The needs identified as needing to be met through MS Clinic services could also be the foundation of a patient-satisfaction tool.

Summary

In this study, self-identified needs of people with multiple sclerosis were compared to needs of significant others of people with MS, using a questionnaire developed from focus-group methodology. The top 10 needs of the MS and SO populations were similar. Highly prevalent were psychological and psychosocial needs. The needs identified in this study can be met through interdisciplinary MS care. As MS healthcare providers and MS community support organizations partner to provide the best possible care for people living with MS and their families, a focus on program planning related to identified needs will facilitate quality care for this population.

Acknowledgments

We thank the patients and significant others who took time to complete and return the survey. The support of the MS Clinic team; the excellent secretarial support of Debra King, Tracey Bentall, Shelley Johnston, and Liz Jackson; and the contribution of Nick Neary, research assistant during the time of the study are greatly appreciated. Tara Clayton provided expert statistical data support.

References

Aronson, K. J., Cleghorn, G., & Goldenberg, E. (1996). Assistance arrangements and use of services among persons with multiple sclerosis and their care givers. Disability and Rehabilitation, 18, 354-361.

Bakas, T., Austin, J. K., Okonkwo, K. F., Lewis, R. R., & Chadwick, L. (2002). Needs, concerns, strategies, and advice of stroke care givers the first 6 months after discharge. Journal of Neuroscience Nursing, 34(5), 242-251.

Benbow, C. L., & Koopman, W. J. (2003). Clinic-based needs-assessment of individuals with multiple sclerosis and significant others: Implications for program planning-psychological needs. Rehabilitation Nursing, 28(4),109-116.

Black, D. A., Grant, C., Lapstey, H. M., & Rawson, G. K. (1994). The services and social needs of people with multiple sclerosis in New South Wales, Australia. Journal of Rehabilitation, 60(4), 60-65.

Buckley, L. M., Vacek, P., & Cooper, S. M. (1990). Educational and psychosocial needs of patients with chronic disease. A survey of preferences of patients with rheumatoid arthritis. Arthritis Care, and Research, 3(1), 5-10.

Deeken, J. F., Taylor, K. L., Mangan, P., Yabroff, K. R., & Ingham, J. M. (2003). Care for the caregivers: A review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. Journal of Pain and Symptom Management, 26, 922-953.

Ford, H. L., Gerry, E., Johnson, M. H., & Tennant, A. (2001). Health status and quality of life of people with multiple sclerosis. Disability, and Rehabilitation, 23, 516-521.

Gerteis, M., Edgman-Levitan, S., Daley, J., & Delbanco, T. L. (1993). Through the patient's eyes: Understanding and promoting patient-centered care. San Francisco: Jossey-Bass/Aha Press Series.

Hileman, J. W., Lackey, N. R., & Hassanein, R. S. (1992). Identifying the needs of home care givers of patients with cancer. Oncology Nursing Forum, 19, 771-777.

Koopman, W. J. (2003). Needs-assessment of persons with multiple sclerosis and significant others: Using the literature review and focus-groups for preliminary survey questionnaire development. Axone, 24(4), 10-15.

McKeown, L. P., Porter-Armstrong, A. P., & Baxter, G. D. (2003). The needs and experiences of care givers of individuals with multiple sclerosis: A system review. Clinical Rehabilitation, 17(3), 234-248.

Nikoletti, S., Kristjanson, L. J., Tataryn, D., McPhee, I., & Burt, L. (2003). Information needs and coping styles of primary family care givers of women following breast cancer surgery. Oncology Nursing Forum, 30, 987-996.

Pierce, L. L., Gordon, M., & Steiner, V. (2004). Families dealing with stroke desire information about self-care needs. Rehabilitation Nursing, 29(1), 14-17.

Sato, A., Ricks, K., & Watkins, S. (1996). Needs of care givers of clients with multiple sclerosis. Journal of Community Health Nursing, 13(1), 31-42.

Silveira, J. M., & Winstead-Fry, P. (1997). The needs of patients with cancer and their caregivers in rural areas. Oncology Nursing Forum, 24(1), 71-76.

Wollin, J., Reiher, C., Spencer, N., Madl, R., & Nutter, H. (1999). Caregiver burden: Meeting the needs of people who support the person with multiple sclerosis. International Journal of MS Care, 1(2), 27-34.

Questions or comments about this article may be directed to Wilma J. Koopman, MScN RN ACNP, at wilma.koopman@lhsc.on.ca. She is a nurse practitioner and clinical nurse specialist for the neuromuscular clinic of the Department of Clinical Neurological Sciences at London Health Sciences Centre, London, ON, Canada.

Cathy-Lee Benbow, MSW RSW, is a coordinator for the Multiple Sclerosis Clinic at London Health Sciences Centre, University Campus, London, ON.

Margaret Vandervoort, MSc, is a project manager at Robarts Research Institute, London, ON.

Table 1. Sample Needs-Assessment Statements

Needs Category                     Needs Statement

Physical               To take a nap daily or sleep longer at night
Health                 To have regular follow-up in the MS clinic
Psychological          To be supported in remaining positive
Accessibility          To have accessible housing
Financial              To be advised about financial planning early
Employment/leisure     To have a way to continue working after my
                       current job becomes too much for me
Information            To have annual education days for people with
                       MS and significant others

Table 2. Demographic Data

                                            MS       Significant
                                         Patients      Others
Variable                                 (N = 353)    (N = 240)

Sex (female-to-male ratio)                  2.39        0.59
Mean age (yr)                                48          48

                                          n     %      n      %

High-school education                    326    96    220     92
Employment (full-time or part-time)      102    31    148     66
Marital status (married and living       240    70    203     85
  with spouse in a single dwelling)
Residence (living in urban community)    209    63    142     60
Disease course
  Stable                                 98     29     60     26
  Relapsing-remitting                    92     27     58     25
  Progressive                           149     44    113     49
Mobility
  No aid required                       155     46    101     44
  Aid required                          182     54    129     56

Table 3. Top Ten Needs of MS Patients (N= 353)

Rank   Needs Statement                              n     %

 1     To have the support of family and friends   330   93.4

 2     To know that doctors are interested         314   88.9

 3     To have a supportive family doctor          312   88.3

 4     To feel productive in my life               308   87.5

 5     To receive regular newsletters from the     285   80.7
       MS clinic

 6     To be encouraged to maintain control of     284   80.4
       my life

 7     To know that the individual MS team         283   80.1
       members that I see are interested

 8     To hear information about the future as     280   79.3
       it relates to how my condition is now

 9     To know that concerns have been heard       275   77.9
       by the MS clinic

10     To receive newsletters from the MS          274   77.6
       Society

Table 4. Top Ten Needs of Significant
Others of MS Patients (N = 240)

Rank                 Needs Statement                  n     %

 1.    To know that doctors are interested           222   92.5

 2.    To have a supportive family doctor            219   91.2

 3.    To know that the individual MS team           219   91.2
       members that my significant other sees
       are interested

 4.    To have the support of family and friends     217   90.4

 5.    To feel productive in my life                 209   87.0

 6.    To receive regular newsletters from the       209   87.0
       MS Clinic

 7.    To be reassured that when I call the clinic   205   85.4
       "I am not bothering them"

 8.    To be encouraged to maintain control of       205   85.4
       my own life

 9.    To receive information about the services     195   81.2
       the MS clinic offers

10.    To have financial security to do all I want   193   80.4
       to do to make life with MS better