Developing a proxy version of the Adult social care outcome toolkit (ASCOT)

Health and Quality of Life Outcomes
Stacey RandJulien Forder

Abstract

Social care-related quality of life is a key outcome indicator used in the evaluation of social care interventions and policy. It is not, however, always possible to collect quality of life data by self-report even with adaptations for people with cognitive or communication impairments. A new proxy-report version of the Adult Social Care Outcomes Toolkit (ASCOT) measure of social care-related quality of life was developed to address the issues of wider inclusion of people with cognitive or communication difficulties who may otherwise be systematically excluded. The development of the proxy-report ASCOT questionnaire was informed by literature review and earlier work that identified the key issues and challenges associated with proxy-reported outcomes. To evaluate the acceptability and content validity of the ASCOT-Proxy, qualitative cognitive interviews were conducted with unpaid carers or care workers of people with cognitive or communication impairments. The proxy respondents were invited to 'think aloud' while completing the questionnaire. Follow-up probes were asked to elicit further detail of the respondent's comprehension of the format, layout and content of each item and also how they weighed up the options to formulate ...Continue Reading

References

May 11, 2004·Social Psychiatry and Psychiatric Epidemiology·Angela BecchiGiovanni de Girolamo
May 19, 2004·Home Health Care Services Quarterly·Perry EdelmanDaniel Kuhn
Nov 17, 2004·Archives of Otolaryngology--head & Neck Surgery·Ziv GilDan M Fliss
Mar 26, 2005·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·S BryanA Laight
Jul 27, 2005·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Jennifer L SteelBrian I Carr
Sep 16, 2005·Journal of Intellectual Disability Research : JIDR·M A VerdugoR J Stancliffe
Oct 19, 2005·The Gerontologist·Philip D SloaneJohn S Preisser
Feb 24, 2006·Alzheimer Disease and Associated Disorders·Linus JönssonAnders Wimo
May 12, 2006·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Gary NaglieMurray Krahn
Mar 24, 2007·International Journal of Geriatric Psychiatry·Juanita HoeGill Livingston
Aug 11, 2007·Journal of Clinical Epidemiology·Shih-Ying HungBruce L Lambert
Nov 13, 2007·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Marlene H FrostUNKNOWN Mayo/FDA Patient-Reported Outcomes Consensus Meeting Group;
Nov 17, 2007·International Journal of Geriatric Psychiatry·Sönke ArltCorinna Petersen
Apr 21, 2009·Clinical Nursing Research·Ingrid MuusKarin C Ringsberg
Sep 29, 2009·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Meryl BrodTorsten L Christensen
Feb 11, 2010·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Simone Kunz
May 19, 2010·Research in Developmental Disabilities·Silke SchmidtMarcello Fleck
Jun 23, 2010·BMC Neurology·Claudia SchiffczykMatthias W Riepe
May 3, 2011·Social Science & Medicine·Dimitris PotoglouJohn E Brazier
Sep 7, 2011·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Peter MakaiAnna P Nieboer
Oct 4, 2011·BMC Neurology·Claudia SchiffczykMatthias W Riepe
Nov 11, 2011·Social Science & Medicine·Julien E Forder, James Caiels
Feb 14, 2012·Health and Quality of Life Outcomes·Juliette N MalleyTerry Flynn
Mar 31, 2012·Health Technology Assessment : HTA·A NettenB Wall
Apr 12, 2012·The Journal of Trauma and Acute Care Surgery·Belinda J GabbePeter A Cameron
Aug 3, 2012·Dementia and Geriatric Cognitive Disorders·Froydis Kristine BruvikKnut Engedal
Aug 4, 2012·The American Journal of Hospice & Palliative Care·Paul A YeamanKye Y Kim
Nov 28, 2012·Medical Decision Making : an International Journal of the Society for Medical Decision Making·David K WhynesUNKNOWN ENOS Investigators
Dec 21, 2012·International Psychogeriatrics·María CrespoMónica Bernaldo de Quirós
Sep 10, 2013·BMC Medical Research Methodology·Alexander M M AronsMarcel G M Olde Rikkert
Jun 18, 2014·Alzheimer Disease and Associated Disorders·Chiara ZucchellaElena Sinforiani
Jan 18, 2015·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Karen M van LeeuwenRaymond W Ostelo
Oct 1, 2015·Health and Quality of Life Outcomes·Billingsley KaambwaJulie Ratcliffe

❮ Previous
Next ❯

Citations

Dec 26, 2019·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Timea Mariann HelterJudit Simon
Dec 19, 2021·Health & Social Care in the Community·Stacey E RandKaren Jones

❮ Previous
Next ❯

Software Mentioned

NVivo
Proxy
ASCOT

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.