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Bridging Self-Care with Health Care in Chronic Illness


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Bridging Self-Care with Health Care
Executive Summary

Main Purpose

To study the impact of a self-care and healthy lifestyle intervention on the quality of life of individuals who are diagnosed with breast cancer or MS.


Problem

As treatment become more sophisticated and more effective, the number of patients living with breast cancer and other chronic disorders is on the rise. Recent developments in psychoneuroimmunology and psychosocial oncology have demonstrated that disease does not restrict itself neatly to one organ, but always affects the person as a whole. Thus, diseases are perpetually influenced by a variety of factors in interaction. These include: psychological, biological, spiritual, cultural, emotional, and social. Psychological factors such as stress, hopelessness, and quality of life become important considerations in planning interventions. So to do lifestyle considerations such as health habits, fatigue level, sleep, diet, and exercise. All of these become important considerations for patients adapting to their changing health state. With health care resources dwindling, more and more patients are faced with taking increased responsibility for their health care that is largely independent of direct medical supervision.

Several studies have shown that cancer patients experience a one-third or more decline in functional capacity due to prolonged physical inactivity, regardless of stage of disease. Moreover, preliminary studies of breast cancer treatment have shown that moderate exercise is accompanied by beneficial effects in both physical and mental domains. In spite of this, very few cancer treatment interventions include exercise, and even fewer include a life style education focus involving stress management training, moderate exercise, healthy nutrition, and personal management skills for reducing the impact of cancer. Even though poor self-care is likely to be a factor contributing to long-term complications, and self-care is acknowledged as important, training in self-care has not been incorporated into the practiced standards of care for cancer patients. Furthermore, several studies have shown that over half of the people with cancer use alternative forms of healing, and up to half of those abandon standard medical treatment in the process. It is possible that interventions focused on self-care and healthy lifestyle may help patients feel more engaged in their healing process, thereby increasing their sense of responsibility and their belief in their ability to control events that affect their lives. Researchers are concluding that the preliminary findings are encouraging, but there is a need to replicate and extend the research and to include outcomes that measure more global indicators of quality of life (physical, functional, psychological, emotional, and social).


Objectives

  1. To investigate the effects of a healthy lifestyle behavior change intervention on:
    • psychological variables (stress, hopelessness and quality of life)
    • physiological variables (heart rate, blood pressure, cholesterol, body weight, aerobic fitness, and functional measures)
    • fatigue and medical outcome
  2. To investigate the long-term effects of the intervention and subsequent lifestyle behavior practices on psychological and physical parameters of health (6 month and 1 year follow-up)
  3. To assess the willingness of patients to participate in such an intervention (attrition rates at follow-up)


Method

This was a controlled outcome study with randomized assignment to one of four treatment conditions: Lifestyle education, moderate exercise, lifestyle education plus moderate exercise, and waiting list control. Demographic data, stress, hopelessness, fatigue, quality of life, functional fitness, vital signs, and health outcome were measured at baseline, 7 weeks, 14 weeks, as well as 6 month and 1 year follow-up. A total of 79 participants completed the study, representing 93% of those began treatment. All participants had been diagnosed with breast cancer or multiple sclerosis. The interventions included combinations of a moderate exercise program and a weekly healthy lifestyle behavior change program teaching coping techniques, stress management, nutrition education, and habit control, delivered over a 14 week period.


Potential Importance of the Study

Although therapeutic technology is increasing the longevity of those diagnosed with chronic disorders such as breast cancer or multiple sclerosis, many people also experience diminishing quality of life during their extended lives. Self-care and healthy lifestyle interventions may add noteworthy and sustained benefits to conventional medical therapy and improve overall quality of life, while at the same time reducing health care costs through fewer physician visits and decreased hospital admissions. However, empirically is needed to assess the predictable efficacy of such elf-care and lifestyle education programs. The results show that treatment groups (compared to controls) experienced statistically significant reductions in stress and physical fatigue, as well as improvement in quality of life and aerobic capacity. The healthy lifestyle seminar was found to be an essential component of the treatment program. Improvements were not related to the age nor time-since-diagnosis of the participants. Lifestyle indicators showed that participants became more active, reported feeling more empowered to take control, and as a result began to feel better physically, more vital, more energetic, and less threatened by their physical circumstances. The findings suggest that lifestyle modification is significantly beneficial for people with breast cancer or multiple sclerosis in helping to treat the whole person and helping them maximize their potential for achieving positive health states.


Bridging Self-Care with Health Care
Project Description

Background

Population aging is a substantial factor contributing to the increasing incidence of chronic illness in Canada and has major implications for health care in the future. Individuals with chronic disease often experience deterioration in their medical status and lifestyle which in turn leads to further loss of health and increased risk of complications. For example, studies show more than one-third of the decline in daily functioning for people with chronic illness can be attributed to conditions resulting from prolonged physical inactivity. However, with the exception of cardiac disease, there are relatively few evidence-based treatment protocols that incorporate exercise and other important lifestyle habits such as skills for managing stress, healthy diet practices, and general health practices. Given that patients are encouraged to reduce stress and develop a healthy lifestyle in order to help manage symptoms and prevent complications, consistent, evidence-based recommendations for self-care need to be established.

There are multiple factors that contribute to a healthy lifestyle. Therefore, in order to develop a comprehensive lifestyle intervention program, input is needed from a broad multidisciplinary team, community support services, and patients themselves. By incorporating input from all major stakeholders, it is possible to bridge patient self-care efforts with health care services in a more integrated system. By systematically field testing the resulting intervention, it is possible to develop a comprehensive system that can be counted on to achieve a predictable result.

In the past, physicians and other health care providers have had the dominant responsibility for optimizing health. For a sustainable system in the future however, responsibility will need to rest coequally with individuals, health providers, policy makers, and community services, in a collaborative effort to maintain health. A sustainable system of the future will need to incorporate programs and policies that increase self-care and decrease dependence or over-dependence on professional medical and health care providers. Health professionals are challenged to develop not only state-of-the-art disease care, but also rehabilitation and health promotion services that can assist people to live fuller lives and maximize their health. Many patients feel they are in a position to understand their health care issues and want to take an active part in their healing. Empowering individuals to participate in their own health care can make a substantial positive contribution to their quality of life. However, ssignificant new directions in health care for chronic illness cannot be achieved without changes in policies and structures that determine the delivery of services. Policies and programs that model healing partnerships and incorporate patients as active participants in their self-care, need further research and development.


Purpose

The main purpose of this was to determine whether people with chronic illness receiving conventional medical care would benefit from a healthy lifestyle education program. More specifically, the following objectives were formed:

  1. To investigate the effects of a healthy lifestyle behavior change intervention on:
    • psychological variables (stress, hopelessness and quality of life)
    • physiological variables (heart rate, blood pressure, cholesterol, body weight, aerobic fitness, and functional measures)
    • fatigue and medical outcome
  2. To investigate the long-term effects of the intervention and subsequent lifestyle behavior practices on psychological and physical parameters of health (6 month and 1 year follow-up)
  3. To assess the willingness of patients to participate in such an intervention (attrition rates at follow-up)


Method

This was a controlled outcome study with randomized assignment to one of four treatment conditions: Lifestyle education, moderate exercise, lifestyle education plus moderate exercise, and waiting list control. Demographic data, stress, hopelessness, fatigue, quality of life, functional fitness (cardio-fitness, muscle endurance, and flexibility), other more general measures of health (blood pressure, heart rate, cholesterol, total body weight), and health outcome were measured at baseline, 7 weeks, 14 weeks, as well as 6 month and 1 year follow-up.


Research Participants

A total of 79 participants completed the study, representing 93% of those began treatment. All participants had been diagnosed with breast cancer or multiple sclerosis. Participants with Breast Cancer must have completed active treatment (chemo, radiation, stem-cell, surgery) with the exception of ongoing hormone therapy for at least 60 days prior to the start-up of study. Participants with Multiple Sclerosis must have 60 days prior to the start-up of study with no acute relapse requiring treatment with steroid therapy. A further condition of participation was that participants were able to walk a distance of 200 metres without aid or rest.

Eligible participants were assigned randomly to one of the following groups:

Group 1

Group 2

Group 3

Group 4

Treatment

Health Seminar
14 week Healthy Lifestyle Education program

Exercise
14 week balanced Low Impact Exercise Program of "moderate effort" beginning from participants current level and building to 1 hour per week

Combined Health Seminar
+ Exercise
14 week program, includes both Health Seminar and the Low Impact Exercise Program

Waiting List Control

Will be offered their program of choice at the end of the study

Time Commitment

1 hour per week

Building to total of 1 hour

Total of 3 hours per week coming in once for 1 hour
and once for 2 hours

1.5 hours for health measures

Frequency

Once per week

Twice per week

Twice per week

4 occasions in 6 months

Follow-up was conducted with all participants 6 months and 1 year after completion of the treatment programs.

There was no cost for participation and parking was provided.
Convenient locations were selected and morning, afternoon, or evening sessions were available.


Treatment Program

Treatment consisted of a healthy lifestyle seminar and low impact exercise of modest intensity, either in isolat1on (groups 1 and 2) or combination (group 3).

The healthy lifestyle seminar is a multi-component intervention incorporating broad dimensions of wellness education within a theme of making modest efforts to develop and maintain healthy lifestyle habits. The protocol was developed by a multidisciplinary team of health care professionals from medicine, nursing, psychology, nutritional science, kinesiology, and education. The seminar consists of health and nutrition education, stress management and behavioral training, and psychosocial group support, in combination with a program of modest exercise. The purpose was to strengthen individuals’ personal control over the management of their health, build their repertoire of stress-coping skills and develop healthy lifestyle habits and a more active partnership with their health care team. The change process occurred through presentations, group discussion, home practice, goal setting, and ongoing monitoring of progress. The program had been field tested previously with older sedentary adults and found to significantly improve a variety of health measures (Baydala, 1997; Malec, 1997).

For the current project, the treatment was adapted with input from a multidisciplinary advisory committee, in order to address issues related to their medical condition. The committee members were from the major medical center in Calgary, community health associations, healthcare service providers/educators, a community eye-health centre, patient advocacy groups and patients. These collaborators (n=35) were knowledgeable about cancer or multiple sclerosis, or general, community or administrative health issues. Members included; an oncologist, neurologist, psychologists, research nurses, nutritionists, dieticians, patient advocate, family doctors, physiotherapists, outreach liason nurse, doctor of public health, exercise specialist, and numerous members from community health services and support groups. The committee recommendations helped optimize the design, organization and implementation of the project, recruitment process, and delivery of treatments. The resulting treatment program combined regular exercise, social support, education/strategies to improve eating habits, reduce stress, enhance quality of life, and guidelines for establishing collaborative partnerships with the health team. The treatment was intended to complement participants’ conventional therapies by offering a new model through which participants, with the support and guidance of their heath care team, could actively participate in their own day-to-day wellness through education and behavior modification. Each individual received a participant manual covering the course content (Malec et al., 2000). An instructors guide followed the same format but provided guidelines, overheads and handout materials for the facilitators to follow a standardized approach to program delivery.

The exercise treatment consisted of low/moderate intensity exercise class led by a licensed fitness instructor. The exercise efforts were neither vigorous nor demanding as participants were encouraged to “work at their own pace” enabling a wide variety of levels to operate within the group. The intensity and duration began at the participants' current level building to a total of one hour of exercise in a session. The sessions started with light stretching warm-up, a muscle strengthening and aerobic exercise session, and finishing with a cool-down. The program followed the Canadian Exercise Physiology guidelines for building strength, endurance and flexibility but modified to accommodate individual needs and differences with respect to the participant's limitations.


Outcome Measures

The outcome measures in this project can be grouped into 3 categories:

  1. Fitness/Functional/ Physiological Tests
    • Heart Rate, Blood Pressure, Cholesterol
    • Stationary-Bike Aerobic Fitness Test (V02max)
    • Flexibility, Endurance, Strength Measures
    • Body weight, Composition, Body Mass Index
  2. Psychological Tests
    • Stress: Derogatis Stress Profile (DSP)
    • Fatigue: Fatigue Impact Scale (FIS)
    • Medical Outcomes Measure (SF-36)
    • Quality of Life in Breast Cancer (FACT-B)
    • Quality of Life in Multiple Sclerosis (MSQOL-54)
    • Health Questionnaire (non-standardized)
  3. Lifestyle Monitors
    • Exercise Log, Relaxation Log, Daily Nutrition Planner, Food Journal


Results

The treatment groups demonstrated statistically significant improvement in psychological measures including reductions in stress, physical fatigue, and quality of life as well as significant physiological improvement in aerobic capacity. The control group did not demonstrate significant improvements but showed significant reductions in their aerobic fitness over the 14- week period. The improvements in the treatment groups were not influenced by the age nor time-since-diagnosis. Lifestyle behaviour indicators showed participants starting the study who were less physically mobile became more active, reported feeling more empowered by taking control and as a result began to feel physically better, more vital, more energetic, and ultimately less threatened by their physical circumstances. The findings here suggest that lifestyle modification is significantly beneficial for individuals with breast cancer or multiple sclerosis.

Although the data analysis showed that all treatment groups made positive health gains compared to controls, the change over time was not the same for all group. The health seminar group and the combined group demonstrated larger and more consistent gains across a greater number of variables than did the exercise only group. Only those who participated the health seminar demonstrated significant improvement on quality of life. Even on the post-test results for aerobic capacity, the health seminar and combined groups showed greater gains than the exercise only group. Follow-up examination of exercise logs showed that participants in both the health seminar and combined groups had increased their daily activity level to the point where it was having an aerobic training effect. This was expected for participants in the combined group because exercise was a part of their treatment program. However, there was no formal exercise component for participants receiving only the health seminar. It would appear that for many people, a structure exercise program is not necessary. When the need to maintain a healthy active lifestyle is presented in the context of forming habits that promote health and wellness, many people implement their own exercise program and maintain it with enough regularity that if increases aerobic functioning.

The 2 year follow-up found 93% of the participants were maintaining the healthy lifestyle changes and self-care efforts they learned in the treatment programs. These findings indicate that lifestyle modification is sustainable for individuals with breast cancer or MS.


Importance of the Study

The findings in this research show the significant health benefits of a healthy lifestyle treatment for individuals with breast cancer or MS. Reductions in stress and fatigue, improvements in quality of life and physical functioning shown in this study, can help people live fuller lives and maximize their health. This research provides a step towards establishing evidence-based protocols for individuals to augment their medical treatments with healthy lifestyle practices. Providers of health services need to have sufficient scientific evidence in order to make safe and effective recommendations to their patients. Recommendations need to include how to deliver these services effectively within a multidisciplinary model. The findings here provide a rationale for developing partnerships among patients, physicians, other health care providers, and community agencies in order to more effectively deliver health promotion activities.

The findings here established the feasibility of developing and delivering a self-care program collaborating with a cross disciplinary team of health professionals from hospital and community services, for different chronic diseases (breast cancer, MS) in the same intervention. This provides encouragement for developing a new model of integration between health care providers, patients, and health services. Collaboration across disciplines (medicine, nursing, physiotherapy, psychology, education, kinesiology) means that health information is more broadly informed and more consistent. Consistent information can result in increased patient confidence in the credibility of the information and the healthcare team, which in turn could increase patient compliance in their health care treatments and improved health outcomes. A team approach provides a scope of treatment that no single health professional can possibly provide.

In this research, combining populations in treatment provided added benefit because helped participants shift their focus away from disease to a positive view and offered a unique approach to the social support given in more traditional programs. Informal reports from the participants suggested that comparing the common challenges associated with different disease conditions helped to broaden their perspectives: It helped them recognize their own strengths, bolster their self-confidence, and motivate them to take positive action. Positive role models in a socially supportive environment can become reinforcing factors for individuals already making lifestyle changes or enabling factors that motivate individuals who are contemplating or just starting to make lifestyle changes. There is research evidence that positive role models increase patients' self-efficacy or confidence in their ability to manage their disease (Bandura, 1991).

Current standards and guidelines for exercise prescription that inform policy and practice today are primarily based on research conducted on young, healthy (and typically male) research subjects. Recommendations used in public campaigns to get people exercising are difficult for many people to achieve and are often not specific to those with chronic disease. This research provides a step towards establishing new standards of policy and practice for exercise and other lifestyle recommendations for two populations with chronic disease.


Bridging Self-Care with Health Care
Participant Testimonials

Dear Carol,

First let me start by saying I am sorry I haven't written this letter before now. I have composed it many times in my head as I am doing my regular work outs or planning a meal or simply relaxing. The course you created truly changed my outlook on the future and has given me a feeling of empowerment in living with my chronic illness.

I was diagnosed with MS in July 99 and that began my search to find a comfort zone in which I could function again without feeling utter hopelessness. The timing of your study was a gift from above, it challenged me to examine myself and allowed me to regain a sense of control back into my life.

The combination of breast cancer survivors and MS patients was probably the most important factor in my opinion. The ladies with breast cancer opened my eyes to strength, courage and determination that I didn't think possible for people who were living with chronic illness, it made me open doors I had closed with my diagnosis. The course content would have been dry without the right combination of instructors, they truly made the classes worthwhile.

So in closing I would like to thank you again for giving me this class, you have impacted my life and my outlook completely, in the most positive way. It is my hope that others will be given the opportunity to benefit from our study group.

Sincerely,

A. B.


Ms. Carol Malec

This is in response to your request for my comments on my participation in the program, bridging Self-Care with Health Care.

The fourteen weeks spent in the program during the spring and summer of 2000 were stimulating physically and emotionally. As a breast cancer survivor also coping with fibromyalgia I am always looking for ways to protect my body, control my ailments and live more comfortably with these problems.

The companionship combined with the more aggressive physical activity program was very enjoyable. I learned a great deal about my body and it's reaction to changes in activity levels. The lectures were enlightening and helpful in encouraging life style changes which seem to be quite beneficial.

I highly recommend this program and would hope that you will be able to make it ongoing. There are many, many people like me who really need this kind of help.

Thank you for allowing me to be a part of this research project.

Yours truly

C. D.


Dear Carol,

In reference to our discussion on 09/18/2000, I would like to submit my testimonial regarding the MS Research Study Group that I took part in from 03/20/2000 to 06/30/2000.

Without a doubt, this was the single most important and beneficial MS related activity I have been involved in since being diagnosed in September of 1995. I have always tried to be an active and athletic individual who loves sports and competition. Over the last five or six years, I had seemed to have lost my urge to participate in these activities with the frequency and skill level that I was used to due to fatigue and weakness caused by my MS. This was very discouraging and at times difficult to deal with.

The Research Study Group made me realize that with things that we were doing in class, which were activities that I would not usually participate in, I could still participate at a fairly high level and also be motivated to improve from class to class. This gave me the competitive component that I needed in addition to the physical benefits. More importantly, it gave me back some of the self-confidence that has been lost over the years due to clumsiness, fatigue and self doubt.

I cannot say enough about how the MS Research Study Class has improved my over-all positive outlook regarding my disease and at the same time restoring a significant part my self-confidence. Therefore, I strongly recommend that it should be offered on a regular basis to all those who qualify.

Sincerely,

E. F.