Objectives: Many people with chronic disease seek acupuncture treatment, despite it being largely excluded from Western state-funded health care systems. What benefits and problems do such people perceive and experience as important? To what extent do three subjective health questionnaires encompass and measure these treatment effects?
Design and outcome measures: A longitudinal qualitative study, using a constant comparative method, informed by grounded theory. Each person was interviewed three times over 6 months and before each interview participants completed three health status questionnaires, EuroQol, COOP-WONCA charts, and MYMOP2. Semistructured interviews used open-ended questions to explore peoples' experiences of illness and treatment, and then used the cognitive interview technique to discuss their questionnaire responses.
Subjects and settings: Eight professional acupuncturists in seven different settings publicized the study to their patients. We interviewed a maximum variation sample of 23 people with chronic illness, who were having acupuncture for the first time.
Results: In addition to changes in their presenting symptoms people experienced whole-person effects that were characterized by changes in strength and energy, and changes in personal and social identity. These effects were distinct but not divisible because of their interdependence and their complex and individual development over time. The health status questionnaires varied in their ability to reflect and measure these changes, and the whole person effects were often missed. After 6 months some people had changed their treatment goals and some individuals were still seeing health improvement. One person found that acupuncture exacerbated her symptoms.
Conclusions: Knowledge of the range, individuality, and varied temporal patterns of treatment outcomes can guide potential patients, clinicians, health care providers, and researchers. Qualitative methods have highlighted the strengths and weaknesses of different outcome questionnaires, and the importance of long-term follow-up. We plan to do further work on appropriate outcome questionnaire selection and development.