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Supplementary Tables and References for the 100 Full-Text Articles Reviewed for the Manuscript Entitled, “Systematic Review of Health-Related Quality of Life Models.”
Supplementary Table A: Subset of 25 Articles using a Uniquely Derived Model …………………. Pages 2-8
Supplementary Table B: Subset of 52 Articles Guided by Existing Models Used Once or Twice …. Pages 9-21
References for the 100 Full-Text Articles Reviewed …………………………………………………Pages 22-32
Supplementary Table A: Subset of 25 Articles Using a Uniquely Derived Model (Disease-specific n = 24; Consensus n = 1).
Authors(year)
Country / Purpose / Design / Sample / Model guided or derived / Models derived /
Bandell-Hoekstra, Abu-Saad, Passchier, & Knipschild (2000)
Netherlands / To review the literature on personal and situational variables, coping strategies, and QOL among children with recurrent headaches. / Literature review / NA / Derived / Authors derived a conceptual model linking primary headache, coping, and QOL in children
Barr & Schumacher (2003)
United States / To identify items for inclusion in a Nutrition Quality of Life survey based on focus groups, surveys, and a consensus process. / Descriptive / 65 patients receiving medical nutrition therapy and 46 dietitians / Derived / Researchers identified six categories of HRQOL inductively and deductively
Brod, Perwien, Adler, Spencer, & Johnston (2005)
United States / To determine how symptoms and associated functional impairments impact QOL in adults with attention deficit hyperactivity disorder. / Descriptive / 29 patients with attention deficit hyperactivity disorder and 4 experts / Derived / Authors derived a model of QOL in attention deficit hyperactivity disorder
Chan & Yeung (2008)
China / To construct and test, using path analysis techniques, a pertinent conceptual model of QOL among people with schizophrenia living in the community. / Descriptive / 200 people with schizophrenia / Derived / Conceptual model of QOL among people with schizophrenia living in the community
Chin, Polonsky, Thomas, & Nerney (2000)
United States / To better understand how older African Americans with diabetes view their illness and to develop a conceptual framework for approaching their care. / Qualitative / 19 patients from an urban academic medical center. / Derived / Conceptual framework for understanding illness and attitudes in older, urban African Americans with diabetes
Edwards, Huebner, Connell, & Patrick (2002)
United States / To develop a conceptual model for assessing generic QOL among youth with physical and developmental disabilities / Qualitative / 33 adolescents with disabilities / Derived / Youth quality of life model with 4 domains - sense of self, social relationships, environment, general quality of life
Julkunena, Gustavsson-Liliusa, & Hietanenc, (2009)
Finland / To examine associations of anger-expression styles of both cancer patients and their partners with patient-perceived partner support and the impact of these variables on long-term HRQOL / Correlational / 153 cancer patients and their partners / Derived / Used path analysis to test a model of anger-expression styles on perceived partner support and HRQOL in cancer patients
Keller (2004)
Canada / To determine the independent association of nutritional risk and HRQOL in frail older adults / Descriptive / 367 frail older adults / Derived / Not named - derived regression model of factors associated with HRQOL in frail older adults
Kelley-Gillespie (2008)
United States / To assemble a comprehensive, integrated model of QOL for older adults with synthesis of the 6 major QOL domains (social, physical, psychological, cognitive, spiritual, environmental) / Literature review / NA / Derived / Integrated Conceptual Model of Quality of Life
King, Hinds, Dow, Schum, & Lee (2002)
United States / To explore patients’ QOL as defined by RNs in adult and pediatric oncology settings; Examine knowledge needed to apply QOL research outcomes in clinical practice; Develop model of nurses' perceptions of patients’ QOL / Qualitative / 24 oncology nurses / Derived / Nurses’ Relationship-Based Perception of Patients’ Quality of Life
Klassen, Pusic, Scott, Klok, & Cano (2009)
Canada / To describe how breast conditions and breast surgery impact patient satisfaction and quality of life in women who undergo breast surgery / Descriptive / 48 breast surgery patients / Derived / Conceptual model of patient satisfaction and QOL in breast surgery patients
López, Eng, Randall-David, & Robinson (2005)
United States / To explore how rural minority breast cancer survivors perceive and address QOL within their own social network and develop a conceptual framework. / Qualitative / 13 breast cancer survivors / Derived / Conceptual Framework of Rural African American Breast Cancer Survivorship QOL
Maurice-Stam, Oort, Last, & Grootenhuis (2009)
Netherlands / To examine factors that affect child cancer survivors’ HRQOL using a model in which demographic and medical characteristics explain HRQOL mediated by life course, coping, and social support / Descriptive / 353 survivors of childhood cancer / Derived / Conceptual model of the process of adjustment to childhood cancer
McEwan, Espie, Metcalfe, Brodie, & Wilson (2004)
United Kingdom / To describe the experience of having epilepsy in adolescence; Understand perceived impact of epilepsy on QOL; Explore changes in QOL issues as adolescents progress towards adulthood; Present a conceptual framework for understanding the impact of epilepsy in adolescence / Qualitative / 22 adolescents with epilepsy / Derived / QOL and identity formation in adolescents with epilepsy
Moffat, Dorris, Connor, & Espie (2009)
United Kingdom / To investigate the impact of childhood epilepsy on QOL directly from the child’s perspective / Qualitative / 22 children with epilepsy / Derived / QOL in children with epilepsy.
Motl, McAuley, & Snook (2007)
United States / To examine relationships among self-efficacy, functional limitations, physical activity, and QOL in participants with multiple sclerosis / Descriptive / 196 individuals with multiple sclerosis / Derived / Analysis linking concepts with quality of life
Perez, Huang, Jansky, Nowinski, Victorson, Peterman, et al. (2007)
United States / To confirm conceptualization of QOL domains underlying the Neuro-QOL instrument using focus groups. To examine HRQOL for patients with neurological conditions / Qualitative / 64 patients and 19 caregivers of those with neurological diagnoses (Alzheimers, Multiple Sclerosis, Amyotrophic lateral sclerosis, Parkinson's, stroke, epilepsy) / Derived / HRQOL domains and subdomains across neurological disorders
Smith Lamping, Banerjee, Harwood, Foley, Smith et al. (2005)
United Kingdom / To develop and validate a measure of HRQOL for persons with dementia / Instrument development / 241 people with dementia and 225 carers of persons w/dementia / Derived / Dementia HRQOL Conceptual framework derived from literature, qualitative interviews, expert opinion, and team discussion.
Smith, Murray, Banerjee, Foley, Cook, et al. (2005)
United Kingdom / To understand HRQOL in people with dementia and examine differences between self-report and family caregiver descriptions of HRQOL / Qualitative / 19 people with dementia and 16 caregivers / Derived / Dementia HRQOL Conceptual framework developed based on literature and qualitative data.
Sousa & Chen, (2003)
United States / To demonstrate latent mean structure analysis as a technique to compare group differences in a QOL model / Descriptive / 924 HIV+ patients / Derived / Hypothesized conceptual model representing QOL.
Swigris, Stewart, Gould, & Wilson (2005)
United States / To 1) gain insight into effects of idiopathic pulmonary fibrosis on patients’ lives; 2) organize the effects into a conceptual framework; 3) examine whether 4 existing instruments capture the elements of the framework; 4) examine the extent that the 4 instruments include irrelevant items to patients with idiopathic pulmonary fibrosis / Qualitative / 20 patients with idiopathic pulmonary fibrosis / Derived / HRQOL in patients with idiopathic pulmonary fibrosis
Urbach, Harnish, & Long (2005)
Canada / To develop a conceptual framework of QOL after abdominal surgery / Qualitative / 21 post-operative patients / Derived / Short term HRQOL after abdominal surgery
Urbanoski, Cairney, Adlaf, & Rush (2007)
Canada / To propose and test a conceptual model of QOL in severely mentally ill consumers / Descriptive / 133 severely mentally ill adults / Derived / QOL model involving substance abuse, psychiatric symptoms, and distress.
White, Lauzon, Yaffe, & Wood-Dauphinee (2004)
United States / To describe QOL of caregivers of stroke survivors and to identify associated factors / Literature review / NA / Derived / QOL for family caregivers of stroke survivors
Cummins (2005)
Australia / To update statements defining QOL to reflect the emerging areas of agreement from the Special Interest Quality of Life Group / Consensus paper / NA / Derived / Conceptual model of well-being
(not disease-specific)
Supplementary Table B: Subset of 52 Articles Guided by Existing Models Used Once or Twice. Models used twice were Maslow (n=2), Mishel (n = 2), and Stewart (n=2).
(Year)
Country / Purpose / Design / Sample / Model guided or derived / Model used /
Collins, Lanham, & Sigford (2000)
United States / To examine the psychometric properties of the Wisconsin HSS Quality of Life Inventory / Instrument development / 414 individuals with traumatic brain injury / Guided / Maslow's Theory of Human Needs
Scholzel-Dorenbos, Meeuwsen, & Olde Rikkert (2010)
Netherlands / (1) To inventory needs assessment instruments in dementia, (2) Explore interaction between unmet needs & HRQOL; (3) to relate needs and HRQOL to Maslow's model to design a dementia specific model / Literature review / NA / Guided
Derived / Maslow's Hierarchy of Needs Model used to derive a dementia specific model
Detprapon, Sirapo-ngam, Mishel, Sitthimongkol, & Vorapongsathorn (2009)
Thailand / To test Mishel’s Uncertainty in Illness Theory to determine factors influencing QOL in persons with head and neck cancer / Descriptive / 250 head and neck cancer patients in Thailand / Guided / Mishel’s Uncertainty in Illness Theory combined with concept of religious participation as a structure provider
Wallace (2003)
United States / To explore uncertainty, anxiety, health-related QOL and affective QOL in men undergoing watchful waiting for prostate cancer / Descriptive / 19 men with prostate cancer / Guided / Mishel’s Uncertainty in Illness Model
Stewart, Teno, Patrick, & Lynn (1999)
United States / To present a general conceptual framework to facilitate the development of measures to describe QOL of dying persons in the context of health care / Literature review / NA / Guided / Stewart’s conceptual framework of dying patients and families combining quality of life and quality of health care indicators
Tang, Aaronson, & Forbes (2004)
United States / To evaluate correlates of QOL in patients with terminal illness / Descriptive / 60 hospice patients / Guided / Stewart’s conceptual model of factors affecting dying patients and families
Bailey (2001)
Canada,
United States / To assemble information on health status factors, therapeutic strategies, and QOL among persons with asthma. To make empirical generalizations about the selected variables from a universe of studies. / Descriptive / Meta-analytical findings from three studies involving persons with asthma (total N = 811) / Guided / Asthma QOL Model (comprised of health status factors, therapeutic strategies, and QOL)
Barrera, Wayland, D'Agostino, Gibson, Weksberg, & Malkin (2003)
Canada / To investigate age differences in psychological adjustment & HRQOL, and to identify predictors of psychological adjustment & HRQOL among preschool, school age, and adolescent patients with cancer / Descriptive / 69 preschool, school age, and adolescent patients with cancer / Guided / Model based on earlier conceptualizations and research with children with chronic illnesses
Bjornson & McLaughlin (2001)
United States / To present descriptive HRQOL studies of children with moderate to severe cerebral palsy and to compare children with quadriplegia, diplegia and hemiplegia. / Literature review / NA / Guided / Five part conceptual framework modified from prior models by the World Health Organization and the National Center for Medical Rehabilitation Research.
Bluvol (2003)
Canada / To examine relationships among hope, family health promoting activity, and QOL among stroke survivors and their spouses. / Descriptive / 40 stroke survivors and their spouses / Guided / Developmental Model of Health and Nursing
Carlsson & Hamrin (2002)
Sweden / To perform confirmatory factor analyses of the Life Satisfaction Questionnaire in women with breast cancer / Instrument development / 362 women with breast cancer and 520 men and women without cancer / Guided / Model consisted of 5 dimensions of QOL based on a review of literature focused on women with breast cancer
Chamlin, Cella, Frieden, Williams, Mancini, Lai, et al. (2005)
United States / To develop the Childhood Atopic Dermatitis Impact Scale to measure the effects of atopic dermatitis on the quality of life of affected young children and their families. / Instrument development / 270 families of children with atopic dermatitis / Guided / Effect of Atopic Dermatitis on QOL conceptual framework
Chaudhury (2003)
United States / To explore reminiscence of personally meaningful past places (i.e., place therapy) among cognitively intact and impaired residents in 4 nursing homes. / Qualitative / 21 nursing home residents (8 cognitively intact, 13 with dementia) and 15 family members of those with dementia / Guided Derived / Lawton’s Quality of Life Conceptual Model
Costantini, Mencaglia, Giulio, Cortesi, Roila, Ballatori, et al. (2000)
Italy / To identify contents of QOL domains using cancer patients as experts / Instrument development / 248 cancer patients / Guided / Conceptual framework with domains identified by the Italian Society of Psycho-Oncology
da Silva Caralho Villa & Rossi (2008)
Brazil / To understand the meaning of QOL in people with coronary artery bypass grafting and their relatives / Qualitative / 11 adults who experienced coronary artery bypass grafting and 10 relatives / Guided / Conceptual Model of Quality of Life of the Centre for Health Promotion, University of Toronto
Dow, Ferrell, Haberman, & Eaton (1999)
United States / To describe the meaning of quality of life in long-term cancer survivors, validate inductively derived QOL themes, and identify and cluster over-arching themes across long-term cancer survivors / Qualitative / 687 cancer survivors / Guided Derived / Conceptual Model based on investigator’s previous research with cancer patients
Echteld, van Elderen, & van der Kamp (2001)
Netherlands / To improve understanding of quality of life outcomes related to percutaneous trans luminal coronary angioplasty (PTCA) by investigating relationships between predictors and correlates of QOL of patients waiting for PTCA / Correlational / 122 percutaneous trans luminal coronary angioplasty patients / Guided / Working model was derived from Maes’ coping with chronic illness model