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Measuring Social Well-Being in People with Chronic Illness

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Abstract

Although social well-being (SWB) is recognized as an integral component of health, it is rarely included in health-related quality of life (HRQL) instruments. Two SWB dimensions were identified by literature review: social support (SWB-SS) and social function (SWB-SF). As part of a larger project to develop item response theory-derived item banks and computerized adaptive testing, we developed and tested items for the SWB banks. Item ratings of three large (n > 600) datasets were conducted by 15 reviewers. Rasch measurement analyses were conducted to initially define item hierarchies. Out of 83 total items, 8 were removed due to model misfit and 8 were removed because of overlapping item content. We then wrote 11 new SWB-SS and 16 new SWB-SF items to fill content gaps, and edited items to improve comprehension and consistency. A total of 94 items (65 SWB-SS, 29 SWB-SF) was administered by computer to 202 cancer patients. Confirmatory factor analyses, Rasch analyses, and evaluations of construct validity were performed. Patients commented favorably on the content of the items and expressed appreciation for attention to this aspect of their HRQL. Using current psychometric standards for unidimensionality, reliability, and content and construct validity, we derived six preliminary item banks for social support (instrumental support, informational support, positive and negative emotional support, positive and negative social companionship) and two for social function (limitations and satisfaction). The empirical construct hierarchy was consistent with clinical observations; e.g., hobbies and leisure activities tended to reflect more limitations, while meeting the needs of family and friends tended to reflect fewer limitations. Optimal care for patients with cancer or other chronic illnesses includes obtaining a complete picture of patients’ physical and psychosocial health status. SWB measures are important since diseases like cancer and their treatment can affect quality of relationships, parental responsibilities, work abilities and social activities. With properly calibrated item banks, it will be possible to precisely and efficiently measure and monitor multiple HRQL dimensions in individual patients, and use their responses to inform care. Qualitative patient feedback and quantitative analyses suggest that it is possible and desirable to include SWB measures in HRQL assessment.

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Acknowledgments

The authors thank the other members of the item review panel for their assistance and expertise (Kimberly Davis, Kelly Dineen, David Eton, Ron Hays, Vicki Helgeson, Stacie Hudgens, Brittany Kleis, James Larson, Amy Peterman, Sarah Rosenbloom, Susan Yount). This study was supported by grant number R01-CA060068 from the National Cancer Institute (D. Cella, principal investigator). Presented in part at the 12th Annual Conference of the International Society for Quality of Life Research (San Francisco, California, October 2005).

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Authors and Affiliations

  1. Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, 750 N. Lake Shore Drive, Rubloff Building, 9th floor, Chicago, IL, 60611, USA

    Elizabeth A. Hahn, David Cella & Rachel T. Hanrahan

  2. Department of Preventive Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

    Elizabeth A. Hahn

  3. Institute for Healthcare Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

    Elizabeth A. Hahn & David Cella

  4. Department of Psychiatry and Behavioral Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

    David Cella

  5. Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

    Rita K. Bode

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  1. Elizabeth A. Hahn
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  4. Rachel T. Hanrahan
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Correspondence to Elizabeth A. Hahn.

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Hahn, E.A., Cella, D., Bode, R.K. et al. Measuring Social Well-Being in People with Chronic Illness. Soc Indic Res 96, 381–401 (2010). https://doi.org/10.1007/s11205-009-9484-z

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