Introduction
Methods
Searches
Inclusion/exclusion
Screening
Quality appraisal
Data extraction
Data synthesis
Study title | Authors | Year | Journal/publication | Country | Study design | Relevant sample | Ages of participants | Aetiology | Quality of paper (MMAT) | Patient-reported Outcome Measure (PROM) |
---|---|---|---|---|---|---|---|---|---|---|
Quality of life in Amyotrophic Lateral Sclerosis patients and caregivers: Impact of assistive communication from early stages. | Ana Londral, Anabela Pinto, Susana Pinto, Luis Azevedo, Mamede De Carvalho | 2015 | Muscle and Nerve | Portugal | Quantitative: Longitudinal cohort study | 27 | 39 to 83 | ALS (Amyotrophic Lateral Sclerosis) | 3 | McGill QoL (MQoL), Communication Effectiveness Index - modified (CETI-m) |
Communication aids for the speech impaired: Cost and quality of life outcomes assessment programs provided by specialist communication aids centres in the UK | Keith Tolley, Brenda Leese, Ken Wright, Sue Hennessy, Corrine Rowley, Janet Stowe, Ann Chamberlain | 1995 | International Journal of Technology Assessment in Healthcare | UK | Quantitative: case series | 78 | 1 to 65+ | CP (Cerebral Palsy, ALS, Stroke, Other | 0 | Author developed tool |
Electronic mail: Service from afar for individuals with physical disabilities | Elizabeth MacKinnon, Gillian King, Tamzin Cathers and John Scott | 1995 | Augmentative and Alternative Communication | USA | Quantitative: RCT pilot | 16 | 7 to 25 | CP, other | 1 | Author developed tool |
Eye tracking communication devices in amyotrophic lateral sclerosis: Impact on disability and quality of life | Marco Caligari, Macro Godi, Simone Guglielmetti, Franco Franchignoni & Antonio Nardone | 2013 | Amyotrophic Lateral Sclerosis and Frontotemporal degeneration | Italy | Quantitative: descriptive | 35 | 43 to 60 | ALS | 2 | Individually-prioritised Problem Assessment (IPPA); Quebec User Evaluation of Satisfaction (QUEST); Psycho-social Impact of Assistive Devices (PIADs) |
Living with locked-in syndrome: an explorative study on health care situation, communication and quality of life. | L. Snoeys, G. Vanhoof and E. Manders | 2013 | Disability and Rehabilitation | Belgium | Mixed methods: descriptive | 8 | 16 to 57 | LIS (Locked in Syndrome) | 1 | SF-36 (adapted) |
Long-term outcomes for individuals who use augmentative and alternative communication: Part I – what is a “good” outcome? | Shelley K. Lund & Janice Light | 2009 | Augmentative and Alternative Communication | USA | Mixed methods; sequential exploratory | 7 | 19 to 23 | CP | 1 | Quality of Life Profile - Physical Disabilities (QoLP-PD); International Classification of Functioning (ICF) levels of functioning |
Home trials of a speech synthesiser in severe dysarthria: patterns of use, satisfaction and utility of word prediction | Isabelle Laffont; Claude Dumas; Delphine Pozzi; Maria Ruquet;Anne Calire Tissier; Frederic Lofaso; Olivier Dixien | 2007 | Journal of Rehabilitation Medicine | France | Quantitative: case series | 10 | 9 to 66 | CP, ALS, LIS, brain injury | 3 | QUEST |
Speech therapy and communication device: Impact on quality of life and mood in patients with amyotrophic lateral sclerosis | Soja Korner, Michael Siniawski, Katja Kollewe, Klaus Jan Rath, Klaus Krampfl, Antonia Zapf, Reinhard Dengler and Susanne Petri | 2012 | Amyotrophic Lateral Sclerosis and Frontotemporal degeneration | Germany | Quantitative: cohort | 38 | Mean age 63.7 | ALS | 0 | SF36 |
Investigating the success factors of expert users to inform device development | Simon Judge, Zoe Clarke, Mark Hawley | 2011 | Everyday Technology for Independence and Care. G.J.Gelderblom et al. (Eds) | UK | Qualitative: description | 0 | 0 | 0 | 0 | CETI-m |
An eye-tracking assistive device improves the quality of life for ALS patients and reduces the care giver burden | Chi-Shin Hwang, Ho-Hsiu Weng, Li-Fen Wang, Chon-Haw Tsai & Hao-Teng Chang | 2014 | Journal of Motor Behaviour | Taiwan | Quantitative: Case control | 20 | 38-85 | ALS | 0 | Taiwanese Depression Questionnaire (TDQ); Amyotrophic Lateral Sclerosis-Quality of Life -Revised (ALS-QoL-R) |
Post-school quality of life for individuals with developmental disabilities who use AAC | Bruce Hamm and Pat Mirenda | 2006 | Augmentative and Alternative Communication | Canada | Mixed methods: embedded design | 4 | 19-24 | CP, | 2 | QoLP-PD; communication survey |
Talking Mats in a discussion group for people with Huntington’s Disease | Lisa Hallberg, Elin Mallgren, Lena Hartelius & Ulrika Ferm | 2013 | Disability and Rehabilitation: Assistive technology | Sweden | Mixed methods; sequential explanatory | 4 | 23-67 | HD (Huntington’s disease) | 2 | Author developed tool |
When are high-tech communicators effective in Parkinson’s disease? | Giorgio Ferriero, Marco Caligari, Gianpaolo Ronconi and Franco Franchignoni | 2012 | International Journal of Rehabilitation Research | Italy | Quantitative: Case study | 1 | 63 | PD (Parkinson’s) | 0 | QUEST; PIADS |
Exploring communication assistants as an option for increasing communication access to communities for people who use augmentative communication | Barbara Collier, Donna McGhie-Richmond & Hazel Self | 2010 | Augmentative and Alternative Communication | Canada | Qualitative: exploratory | 9 | 26-70 | CP | 1 | Author developed tool |
Assessment of computer aided assistive technology: analysis of outcomes and costs | Ursula Hass, Agneta Andersson, Hakan Brodin and Jan Persson | 1997 | Augmentative and Alternative Communication | Sweden | Quantitative: cohort | 74 | 5 to 74 | Not specified | 3 | Rosser classification (modified); Nottingham Health Profile (NHP); Measure of Goal fulfilment |
PROM/tool used | Number of reports using tool | Aetiology/ies1 | Type of AAC (H = computer of electronic based devices, L = paper-based systems) | Aggregated sample size | Content validity, as reported in the study | Number of papers reporting authorship (who completed the PROM): | |||
---|---|---|---|---|---|---|---|---|---|
Patient | Researcher | Collaborative | Not reported | ||||||
McGill Quality of Life Questionnaire (MQoL) | 1 | ALS | Tablet with text 2 speech software (H) | 27 | Yes: for people with ALS | 1 | |||
Communication Effectiveness Index - Modified (CETI-m) | 2 | ALS | Tablet with text 2 speech software (H) | 27 | Yes: original CETI valid for people with aphasia | 1 | 1 | ||
Author developed toola | 4 | CP, MND, HD, Other | Range of hi-tech and low-tech, Talking Mats (H, L) | 107 | No | 3 | 1 | ||
Individually Prioritised Problem Assessment (IPPA) | 1 | ALS | Eye-tracking, E-Tran (H, L) | 35 | Not reported | 1 | |||
Psychosocial Impact of Assistive Devices (PIADs) | 2 | ALS, PD, | Eye-tracking, E-Tran, Computer-based, direct access (H, L) | 36 | Not reported | 1 | 1 | ||
Quebec User Evaluation of Satisfaction (QUEST) | 3 | PD, CP, ALS, LIS, brain damage | Eye-tracking, E-Tran, Computer-based, direct access (H, L) | 60 | Not reported | 1 | 2 | ||
SF-36 (adapted) | 2 | LIS, ALS | Alphabet boards, text 2 speech, computers, direct and indirect access (H, L) | 46 | Yes | 2 | |||
QoL profile for people with sensory and physical disabilities (QoLP-PD) | 2 | CP | Communication boards, switch access AAC, direct access AAC, eye-gaze (H, L) | 11 | Yes | 1 | 1 | 1 | |
International Classification of Functioning levels of impairment | 1 | CP | Communication boards, switch access AAC, direct access AAC (H, L) | 7 | Not reported | 1 | |||
Arc’s self-determination scale | 1 | CP | Communication boards, switch access AAC, direct access AAC (H, L) | 7 | Not reported | 1 | |||
Revised ALS Specific Quality of Life Instrument (ALS-QoL-r) | 1 | ALS | Spring track (eye-gaze), phoneme board (H, L) | 20 | Not reported | 1 | |||
Taiwan Depression Scale (TDQ) | 1 | ALS | Spring track (eye-gaze), phoneme board (H, L) | 20 | Not reported | 1 | |||
Communication questionnaire | 1 | CP | Communication book, eye gaze (H, L) | 4 | Yes | 1 | |||
Rosser classification (modified), | 1 | Not specified | Computer-based (H) | 74 | Not reported | 1 | |||
Nottingham Health Profile (NHP) | 1 | Not specified | Computer-based (H) | 74 | Yes | 1 | |||
Measure of goal fulfilment | 1 | Not specified | Computer-based (H) | 74 | Not reported | 1 |
PROM | Content items | |||||||||
---|---|---|---|---|---|---|---|---|---|---|
IPPA | Basic needs | Sharing new information | Social closeness | |||||||
QUEST | Satisfaction with device | |||||||||
PIADs | Functional independence | QoL | Well-being | Competence | Adaptability | Self-esteem | ||||
SF36 | Physical functioning | Physical role | Bodily pain | General health | Vitality | Social functioning | Emotional role | Mental health | ||
QoLP-PD | Mental well being | Physical well-being | Social involvement | Community involvement | Access to resources | Life enhancing opportunities | Physical | Psychological | Spiritual | Social |
Communication survey | Communication with people | Communication in specific places | Communication functions | |||||||
ICF levels of impairment | Receptive language | Reading comprehension | Communication interaction skills | Linguistic competency | Functional communication | Education and vocational achievement | Self-determination | Quality of life | Contextual factors | |
NHP | Sleep | Energy | Social isolation | Pain | ||||||
Rosser (modified) | Personal care | Usual activities | Communication | Pain | Satisfaction | Dependence | ||||
Goal fulfilment | Handling equipment | Functional ability (reading and writing) | Activities or roles | |||||||
TDQ | Physical | Sentimental | Cognitive | |||||||
ALS-QoL-r | Negative emotion | Interaction with people and the environment | Religiosity | Intimacy | Physical symptoms & bulbar function |
Patient reported outcome measure | Domains | ||||||||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Communication | Cognitive | Role | Health | QoL | Physical | Social | Spiritual | AAC equipment | |||||||||||||
Sub-domain: | Language Skills | Function | Activities | Actualisation | General | Mental | Emotional well-being | Sleep | Energy | Symptoms | Pain | Independence | Functioning | Relationships | Competence | Adaptability | Satisfaction | ||||
IPPA | x | x | x | ||||||||||||||||||
QUEST | x | ||||||||||||||||||||
PIADs | x | x | x | x | x | x | |||||||||||||||
SF36 | x | x | x | x | x | x | x | x | |||||||||||||
QoLP-PD | x | x | x | x | x | x | x | x | |||||||||||||
Communication Survey | x | x | x | ||||||||||||||||||
ICF levels of functioning | x | x | x | x | x | x | |||||||||||||||
NHP | x | x | x | x | |||||||||||||||||
Rosser Classification (modified) | x | x | x | x | x | ||||||||||||||||
Measure of Goal fulfilment | x | x | x | ||||||||||||||||||
TDQ | x | x | x | ||||||||||||||||||
ALS-QoL-r | x | x | x | x | x |