| Literature DB >> 35383060 |
Kyra Sierakowski1,2, Manraj N Kaur3, Kathleen Sanchez2, Gregory Bain4, Stefan J Cano5, Philip Griffin6, Anne Klassen7, Andrea L Pusic3, Don Lalonde8, Nicola R Dean6,2.
Abstract
OBJECTIVES: The purpose of this study was to identify and understand the issues that are relevant to patients with hand conditions. The data were used to develop a patient-reported outcome measure (PROM) for adults with hand conditions (HAND-Q) and refine it with input from patients and clinician experts.Entities:
Keywords: hand & wrist; health services administration & management; surgery
Mesh:
Year: 2022 PMID: 35383060 PMCID: PMC8984039 DOI: 10.1136/bmjopen-2021-052780
Source DB: PubMed Journal: BMJ Open ISSN: 2044-6055 Impact factor: 2.692
Demographics of participants in qualitative interviews
| Australian | Canadian | Total | |
| Number of participants | 40 | 22 | 62 |
| Age | |||
| Average | 63 | 67 | 65 |
| Range | 38–78 | 27–85 | 27–85 |
| Gender | |||
| Male | 18 | 10 | 28 |
| Female | 22 | 12 | 34 |
| Hand condition | |||
| Trigger finger | 4 | 4 | 8 |
| Osteoarthritis | 8 | 0 | 8 |
| Rheumatoid Arthritis | 1 | 0 | 1 |
| Carpal Tunnel Syndrome | 8 | 12 | 20 |
| Trauma | 6 | 1 | 7 |
| Dupuytren’s Contracture | 11 | 3 | 14 |
| Other | 2 | 2 | 4 |
| Funding | |||
| Public | 17 | 22 | 39 |
| Private | 23 | 0 | 23 |
| Anaesthesia | |||
| Local only | 7 | 21 | 28 |
| Sedation, General Anaesthesia | 33 | 1 | 34 |
Conceptual framework of the HAND-Q with supportive participant quotes and examples
| Top level domain | Subdomain | Major theme | Minor theme | Categories (where applicable) and participant words and examples |
| Health-related quality of life | Physical | Symptoms | Pain | Intensity (‘mild’, ‘severe’) |
| Frequency (‘all the time’, ‘on and off’ | ||||
| Type (‘ache’, ‘stinging’, ‘burning’, ‘cramp’) ‘discomfort’, ‘sore’) | ||||
| Aggravating Factors (eg, during activities, at rest, when touched) | ||||
| Sensation | Lack of Sensation (‘numb’, ‘dead feeling’) | |||
| Abnormal Sensation (‘buzzing’, ‘going to sleep’, ‘pins and needles’) | ||||
| Excessive Sensation (‘sensitive’) | ||||
| Weakness | (‘weak’, ‘feeling tired’) | |||
| Function | Experience | Impaired mobility (‘cannot make a fist’, ‘unable to flatten fingers’) | ||
| Sleep (‘pain drives me insane night’) | ||||
| Power grip (eg, holding mug or glass, carrying bags, turning a tap) | ||||
| Pinch grip (eg, using cutlery, turning key, picking up fine objects) | ||||
| Impact | Hygiene (eg, wiping after using the toilet, using a towel after a shower) | |||
| Chores (eg, washing dishes, folding laundry, vacuuming) | ||||
| Dressing (eg, doing up bra, buttoning a shirt, tying shoelaces) | ||||
| Recreational activities (eg, crochet, gardening) | ||||
| Psychological | Emotional distress | Irritation | ‘…it does get a bit frustrating that it is ongoing’ | |
| Being down | ‘sick of the same things’, ‘can't take it anymore’ | |||
| Overwhelmed | ‘it has demolished me’, ‘I can't go through this again’ | |||
| Self-conscious | ‘hide my hands’, ‘I didn't want people to know I was wearing a splint’ | |||
| Acceptance | Accept | ‘it is what it is’ | ||
| Social | Isolation | Conceal—hand | ‘I don't like going out because I can't cut food’ | |
| Function (incl. work) | Job loss | ‘I'd lost my typing role’, ‘doctors deemed me unfit for work’ | ||
| Modify work | ‘I just run the machinery instead of using it’ | |||
| Relationships | ‘spouse took me to appointments’, ‘spouse helped with chores’ | |||
| Appearance | Appearance | Hand region (ie, fingers, thumb, palm, knuckles, skin, nails, scar) | Size | ‘fat’, ‘pudgy’, ‘swollen’, ‘large’, ‘big’, ‘skinny’ |
| Shape | ‘curled’, ‘deformed’, ‘misshaped’ | |||
| Colour | ‘red’, ‘white’, ‘pink’ | |||
| Contour | ‘distorted’, ‘twisted’, ‘stuck out’, ‘curled’, ‘crooked’ | |||
| Similarity | ‘match’ | |||
| Smoothness | ‘bumps’, ‘lumps’ | |||
| Scenarios | ‘up close’, ‘far away’, ‘when waving hands’, ‘in photographs’ | |||
| Age | ‘old’, ‘wrinkled’, ‘age spots’, ‘veins stick out’ | |||
| Skin | ‘tight’, ‘taut’ | |||
| Qualitative | not right’, ‘abnormal’, ‘ugly’, ‘imperfect’ | |||
| Experience of care | Experience of Care | Preprocedure information | Amount | ‘enough’, ‘knew what to expect’, ‘more needed’ |
| Format of delivery | ‘written’, ‘might be more visual’, ‘pamphlet’, ‘information package’ | |||
| Accessibility | ‘easy to understand’, ‘sufficient time to review’ | |||
| Nature of information | eg, details of the procedure, type of anaesthesia, what to do in case of a complication, precautions, recovery, and outcomes to be expected | |||
| Satisfaction—hand surgeon and hand therapist | Description | professional’, ‘kind’, ‘friendly’, ‘attentive’, ‘easy to talk to’, ‘caring’ | ||
| Nature of appointment | ‘feeling heard’, ‘feeling unrushed’, " included in decisions’ | |||
| Satisfaction—hand clinic | Overall | ‘nice atmosphere’, ‘clean’, ‘sterile’, "ease of booking appointment | ||
| Satisfaction—office staff | Overall | ‘on schedule’, ‘worked as a team’, ‘made me feel welcomed’ | ||
| Anaesthesia | Anaesthesia | Experience | Worry—not working | ‘amount of anaesthetic not being enough’, ‘feeling pain’ |
| Worry—recovery | eg, impact on daily activities | |||
| Postanaesthesia symptoms | Type and experience | ‘feeling sleepy’, ‘tired’, ‘down’, ‘Irritable’, ‘unwell’, ‘confused’ | ||
| Awake procedure | Administration feeling | ‘pain’, ‘tingly’, ‘warm’ | ||
| Sensation at the site | ‘pain’ | |||
| Distress | Seeing blood or surgical equipment—‘worried’, ‘anxious’ | |||
| Environment | Operating room—‘comfortable’, ‘clean’, ‘sterile’ | |||
| Ability to ask questions | ||||
| Treatment | Hand Splint or Brace | Appearance of hand | Qualitative | ‘people don't look at the hand’, " made my hand look normal’ |
| Cleaning splint or brace | Qualitative | ‘it looks filthy because you cannot clean it’ | ||
| Donning and doffing | ‘cumbersome’, ‘irritating’, ‘uncomfortable’, ‘pain’, ‘stuck’ | |||
| Perform daily activities | e.g., being physically active, sleep, socialise, dress, and care for hand | |||
| Financial burden | ‘Expensive’ | |||
| Outcome | Appraisal | ‘glad’, ‘pleased’, ‘satisfied’, ‘changed my life’, ‘met expectations’ |
Summary of the number of items that were added, retained, revised or dropped during the refining of the HAND-Q scales
| Response options | Recall period | Initial items | Items added | Items revised | Items dropped | Items for field-test | |
| Health-Related Quality of Life scales | |||||||
| Function | Difficulty | Past week | 34 | 3 | 14 | 2 | 35 |
| Symptoms | Severity | Past week | 18 | 6 | 17 | 2 | 22 |
| Psychological | Frequency | Past week | 16 | 3 | 0 | 0 | 19 |
| Life impact | Severity | Past week | 9 | 2 | 1 | 0 | 11 |
| Sleep | Frequency | Past week | 8 | 1 | 3 | 1 | 8 |
| Social | Agree/disagree | Past week | 13 | 0 | 4 | 0 | 13 |
| Sexual | Bothered | None | 9 | 0 | 0 | 0 | 9 |
| Work | Agree/disagree | None | 9 | 2 | 3 | 0 | 11 |
| Acceptance | Agree/disagree | None | 7 | 0 | 6 | 0 | 7 |
| Appearance scale | |||||||
| Appearance | Satisfaction | Now | 29 | 1 | 10 | 0 | 30 |
| Experience of care scales | |||||||
| Anaesthesia | Bothered | None | 17 | 0 | 5 | 3 | 14 |
| Post-anaesthesia symptoms | Severity | None | 12 | 2 | 0 | 1 | 13 |
| Awake procedure | Satisfaction | None | 17 | 1 | 8 | 1 | 17 |
| Information | Satisfaction | None | 21 | 1 | 7 | 2 | 20 |
| Surgeon | Agree/disagree | Recent appointments | 25 | 1 | 8 | 1 | 25 |
| Hand therapist | Agree/disagree | Recent appointments | 20 | 1 | 4 | 2 | 19 |
| Hand clinic | Agree/disagree | Recent appointments | 14 | 0 | 3 | 1 | 13 |
| Office staff | Agree/disagree | Recent appointments | 13 | 1 | 2 | 0 | 14 |
| Hand treatment scales | |||||||
| Overall outcome | Agree/disagree | Most recent treatment | 10 | 0 | 13 | 1 | 9 |
| Splint | Satisfaction | Most recent splint | 11 | 2 | 1 | 1 | 12 |
| Total | 312 | 28 | 109 | 15 | 319 | ||
Demographics of participants in cognitive interviews
| Australian | Canadian | American | Total | |
| No of participants | 9 | 7 | 4 | 20 |
| Age | ||||
| Average | 61 | 64 | 56 | 60 |
| Range | 47–76 | 55–76 | 32–76 | 32–76 |
| Sex | ||||
| Male | 3 | 2 | 2 | 7 |
| Female | 6 | 5 | 2 | 13 |
| Hand condition | ||||
| Trigger finger | 1 | 1 | 2 | 3 |
| Osteoarthritis | 4 | 2 | 3 | 7 |
| Rheumatoid Arthritis | 1 | 0 | 0 | 1 |
| Carpal Tunnel Syndrome | 2 | 5 | 7 | 9 |
| Trauma | 2 | 2 | 3 | 5 |
| Dupuytren’s Contracture | 2 | 1 | 1 | 3 |
| Other | 1 | 1 | 2 | 3 |
Figure 1Composition of expert panel in the rounds of refining of the scale.