Development of a health-related website for parents of children receiving hematopoietic stem cell transplant: HSCT-CHESS.

INTRODUCTION: Parents of pediatric hematopoietic stem cell transplant (HSCT) play a pivotal role in the care of their child during and after transplant. In addition to the child's comforter, parents also serve as care coordinators and conduits of communication between various health care providers, family and community members. The stress on the parent and family is enormous during this process, which for many is compounded by geographic dislocation to accompany their child during the rigorous treatment and recovery process. For many parents, their own recovery spans months to years. METHODS: Parental activation, a process of becoming informed to participate in decisions, collaborate with health care providers, and manage care provided the conceptual framework to develop an eHealth approach for this population. HSCT-CHESS was developed, based on previous success with an existing eHealth system of integrated services, the Comprehensive Health Enhancement Support System (CHESS). CHESS(TM) is designed to help individuals and families cope with a health crisis or medical concern. The iterative user-centered development process for HSCT-CHESS included parents of HSCT recipients, representatives from an HSCT Advocacy Group, and members of the clinical, research, development and design teams. This rigorous process, including online focus groups and surveys, utilization of a parental user group, and an editorial and development process are described. CONCLUSION: As the population of cancer survivors and caregivers increase and as the oncology workforce becomes more stretched; developing eHealth applications may be an approach to address many of caregivers unmet needs. The purpose in describing this process is to help others when considering such an endeavor. HSCT-CHESS is now being tested in a randomized controlled trial versus standard care to evaluate its impact on the quality of life of both the parent and child HSCT recipient.

CHESS: ten years of research and development in consumer health informatics for broad populations, including the underserved.

This paper reviews the research and development around a consumer health informatics system CHESS (The Comprehensive Health Enhancement Support System) developed and tested by the Center for Health Systems Research and Analysis at the University of Wisconsin. The review will place particular emphasis on what has been found with regard to the acceptance and use of such systems by high risk and underserved groups.

Impact of surgery and chemotherapy on the quality of life of younger women with breast carcinoma: a prospective study.

BACKGROUND: Studies that prospectively and simultaneously evaluate, within the first year of diagnosis, the impact of surgery and chemotherapy on quality of life (QOL) of younger women (60 years or younger) with early stage breast carcinoma are limited. METHODS: Quality of life of 103 women who had surgery (lumpectomy, 49; mastectomy, 54) approximately 1 month before the start of the study was evaluated at baseline and again after 5 months. Thirty-two women received chemotherapy during the study. RESULTS: Over time, subjects reported improvement in body image and physical, emotional, and functional well-being (P < 0.001). They were less bothered by swollen/tender arms and worried less about risk of cancer to family members (P < 0.001). However, satisfaction with sex life, social support, and social/family well-being declined (P < 0.001). In the period closer to surgery, women with mastectomy reported poorer body image (P = 0.001) and worse functional (P = 0.08) and physical well-being (P = 0.10). Women with lumpectomy worried more about the effects of stress on their illness (P < 0.01) and had lower emotional well-being (P = 0.06). By 6 months after surgery, the two groups reported similar QOL scores. Chemotherapy had a negative impact on women's sexual functioning (P = 0.01) and their physical well-being (P = 0.09). Women who received chemotherapy also reported more shortness of breath (P = 0.07). Post hoc analysis showed that women with breast reconstruction had higher emotional well-being at baseline than those with lumpectomy (P = 0.001) and mastectomy alone (P < 0.01). CONCLUSIONS: Younger women with breast carcinoma could experience a range of adjustment problems at various points in the treatment cycle. Interventions that would help reduce the negative impact of treatment on QOL need to be designed and integrated into routine clinical practice.

Effect of computer support on younger women with breast cancer.

OBJECTIVE: Assess impact of a computer-based patient support system on quality of life in younger women with breast cancer, with particular emphasis on assisting the underserved. DESIGN: Randomized controlled trial conducted between 1995 and 1998. SETTING: Five sites: two teaching hospitals (Madison, Wis, and Chicago, Ill), two nonteaching hospitals (Chicago), and a cancer resource center (Indianapolis, Ill). The latter three sites treat many underserved patients. PARTICIPANTS: Newly diagnosed breast cancer patients (N = 246) under age 60. INTERVENTIONS: Experimental group received Comprehensive Health Enhancement Support System (CHESS), a home-based computer system providing information, decision-making, and emotional support. MEASUREMENTS AND MAIN RESULTS: Pretest and two post-test surveys (at two- and five-month follow-up) measured aspects of participation in care, social/information support, and quality of life. At two-month follow-up, the CHESS group was significantly more competent at seeking information, more comfortable participating in care, and had greater confidence in doctor(s). At five-month follow-up, the CHESS group had significantly better social support and also greater information competence. In addition, experimental assignment interacted with several indicators of medical underservice (race, education, and lack of insurance), such that CHESS benefits were greater for the disadvantaged than the advantaged group. CONCLUSIONS: Computer-based patient support systems such as CHESS may benefit patients by providing information and social support, and increasing their participation in health care. These benefits may be largest for currently underserved populations.

Experiences of women with breast cancer: exchanging social support over the CHESS computer network.

Using an existential-phenomenological approach, this paper describes how women with breast cancer experience the giving and receiving of social support in a computer-mediated context. Women viewed their experiences with the computer-mediated support group as an additional and unique source of support in facing their illness. Anonymity within the support group fostered equalized participation and allowed women to communicate in ways that would have been more difficult in a face-to-face context. The asynchronous communication was a frustration to some participants, but some indicated that the format allowed for more thoughtful interaction. Motivations for seeking social support appeared to be a dynamic process, with a consistent progression from a position of receiving support to that of giving support. The primary benefits women received from participation in the group were communicating with other people who shared similar problems and helping others, which allowed them to change their focus from a preoccupation with their own sickness to thinking of others. Consistent with past research is the finding that women in this study expressed that social support is a multidimensional phenomenon and that their computer-mediated support group provided abundant emotional support, encouragement, and informational support. Excerpts from the phenomenological interviews are used to review and highlight key theoretical concepts from the research literatures on computer-mediated communication, social support, and the psychosocial needs of women with breast cancer.

CHESS (Comprehensive Health Enhancement Support System): an interactive computer system for women with breast cancer piloted with an underserved population.

The Comprehensive Health Enhancement Support System (CHESS) is an interactive computer system containing information, social support, and problem-solving tools. It was developed with intensive input from potential users through needs-assessment surveys and field testing. CHESS had previously been used by women in the middle and upper socioeconomic classes with high school and college education. This article reports on the results of a pilot study involving eight African-American women with breast cancer from impoverished neighborhoods in Chicago. CHESS was very well received; was extensively used; and produced feelings of acceptance, motivation, understanding, and relief.

CHESS: An interactive computer system for women with breast cancer piloted with an under-served population.

The Comprehensive Health Enhancement Support System (CHESS) is an interactive computer system containing information, social support and problem solving tools. It was developed with intensive input from potential users through needs-assessment surveys and field testing. CHESS had previously been used by women in the middle and upper socio-economic classes with high school and college education. This article reports on the results of a pilot study involving eight African-American women with breast cancer from impoverished neighborhoods in the city of Chicago. CHESS was very well received, extensively used and produced feelings of acceptance, motivation, understanding and relief.

The comprehensive health enhancement support system.

This article describes the process of using needs assessment data to develop an interactive information technology specifically designed to support patients in a health-related crisis. The Comprehensive Health Enhancement Support System (CHESS) is an interactive information, social support, and problem-solving system that was developed by a team at the University of Wisconsin. This article looks at the program developed for breast cancer patients and their families.