Reasonable adjustments to the application of the comprehensive care standard within an Australian mainstream internal medicine outpatient clinic attended by adults with Down syndrome

Figures & data

Table 1. The six elements of comprehensive care (left sided column), and audit data of the identified reasonable adjustments to usual clinical process, content, knowledge, and clinic organisation with suggested relevance to particular comprehensive care elements (right-sided column).

Six elements of comprehensive care to implement the Comprehensive Care Standard (ACSQHC, 2018)		Identified reasonable adjustments to usual clinical practice with (corresponding relevant comprehensive care element(s))
1	Clinical assessment and diagnosis (ACSQHC, 2020a) Communication appropriate Person centred Tailored to recipient Patient symptoms and expression of these Sharing understanding of provisional, differential, and final diagnoses Awareness of changing information and requirement of review of diagnosis.	To usual clinical process Using appropriate communication and engagement skills with patients with intellectual disability and their supports (1–6) Being alert to atypical presentations for physical health problems (1, 3) Deferring physical examination until second meeting to reduce patient stress (1) Opportunistic testing under general anaesthesia with cooperation with local public hospital for selected patients (1) Working with disability supports required to facilitate the access and participation of patients with Down syndrome in their healthcare at outpatients and inpatients (3, 4) Checking, clarifying roles and abilities of disability supports to assist with health management (4, 5); addressing gaps in skills (4, 5) Establishing networks with palliative and dementia services around patients with Down syndrome and dementia, and their disability supports; share documentation with other health and disability networks (4) Taking into account lowered health literacy of patients and disability support (4) Problem solving around barriers in healthcare management (1) To usual clinical content Nature of the intellectual disability, sensory and motor disabilities, communication, its impact on daily life and function (1) What daily life is like, what life has been like growing up (4) Coverage of Down syndrome syndromal and non-syndromal health issues; healthy living; multiple problems (1) Nature of health literacy of patient with Down syndrome and their disability supports’ (1, 4, 5) Pre-planning the disability-NDIS-health interface as regards disability supports for any inpatient care (1, 3, 4, 5) Ageing and the future, family (1, 4) Name of substitute/supported decision maker (5) End of life care for patients with Down syndrome with late- stage dementia (2) Dementia screening for adults with Down syndrome aged ≥50 years (1, 2, 3) Baseline younger age cognitive assessment and serial testing To usual clinical knowledge Down syndrome syndromal and need to explore beyond (3, 4, 6) High rates of hospitalisation and risks anticipation (1–6) Possible lower health literacy of patients with Down syndrome and their disability supports Disability sectoral training and NDIS regulations with respect to disability supports for health, medication management, codes of conduct, quality indicators (5, 6) NDIS principles of interface with mainstream (4, 5) Disability values (1,5) To usual clinic organisation Initially longer and more frequent appointments for baseline 2 × 1 h, 2 × ½ hour, then half hourly for follow ups or annual reviews (1–6) Building in extra time for appointment to problem solve issues with disability sector, refinement of person-centred approach (1, 4, 5, 6) Expectation of patient attendance with disability supports (4, 5, 6) Key contacts-patient, family, disability support workers, substitute decision maker, updates (4, 6) Outpatient clinic administration staff contact, organisation, reminders (5) Documentation recipients include patient, disability supports, substitute decision maker (4) Parking; map; more chairs for the clinic room
2	Identify goals of care (ACSQHC, 2019a) Clinical goals Personal goals Short, medium, and long term goals Preferences for end of life or treatment limiting orders.
3	Risk screening and assessment (ACSQHC, 2019b) Identify risk and planned mitigation strategies.
4	Develop a single comprehensive care plan (ACSQHC, 2019c) Personal identifiers and preferences People involved in care Activities of daily living Take into account health literacy Include patients, family, carers other support people Identify patient’s personal and clinical goals Identify risks Contemporary and accurate Succinct and need to include critical information Recipients of documented plan Encompasses clinical assessment, planned interventions, monitoring plans.
5	Deliver comprehensive care (ACSQHC, 2020b) Dynamic in response to patient health Person centred involving patient, family, and other support people Review and revisiting avenues to prompt review of the delivery of comprehensive care.
6	Review and improve comprehensive care delivery (ACSQHC, 2019d) Planned interventions Monitoring plans.

Table 2a. Audit data from cohort of all adult patients with Down syndrome attending a mainstream internal medicine outpatient clinic for comprehensive health care over a 10-year period: demographic, referral patterns, disease profile.

Demographic profile
Item		Total = 54 Number, n (%)
Gender
	Male	31 (57%)
	Female	23 (43%)
	Average age, range	36 years, 17–68 years
Number of deaths		10 (17%)
Average age at death, range		51.2 years, 30–61 years
Referral patterns
Referral source
	GP	50 (93%)
	Paediatrician/other specialist	4 (7%)
Reason for referral
	Transition from paediatrics	8 (15%)
	Single focus	10 (5%)
	General review	32 (59%)
	Behaviour	4 (7%)
Physical health profile
Health system		Total = 54 Number, n (%)	Range of conditions
	Sensory	38 (70%)	Vision and hearing impairments, for example, cataracts.
	Health promotion needs	31 (57%)	Physical activity, healthy weight, immunisations, dental visits.
	Musculoskeletal	30 (56%)	Degenerative disease, spinal stenosis, gout, hip dysplasia, falls, osteoporosis, pain, juvenile rheumatoid, shortened limbs, joint surgery.
	Gastrointestinal	30 (56%)	Celiac, H. pylori, reflux, choking, imperforate anus, Hirschsprung, constipation, duodenal atresia, undiagnosed abdominal pain.
	Cardiac	29 (54%)	Congenital heart disease, valvular disease, postural hypotension, bradyarrhythmia, syncope, presyncope, pacemaker.
	Respiratory	28 (52%)	Obstructive sleep apnoea, recurrent infections, cilial dysfunction, pulmonary embolus, congenital lung anomaly, bronchiectasis, no smokers.
	Central nervous system	22 (41%)	Dementia, epilepsy, stroke.
	Thyroid	18 (33%)	Hypothyroidism.
	Obesity	16 (30%)	BMI > 30.
	Skin	15 (28%)	Folliculitis, psoriasis, seborrhoeic dermatitis, eczema.
	Mental illness	14 (26%)	Obsessive compulsive disorder, anxiety, depression, autism.
	Male and female health	11 (20%)	Ambiguous genitalia, hypogonadism.
	Behaviours of concern	11 (20%)	Exploration if manifestation of physical health concern.
	Polypharmacy (five or more medications)	10 (19%)
	Haematology	10 (19%)	Factor V Leiden, polycythaemia, leucopoenia, thalassaemia, immunocompromise.
	Renal/urology	9 (17%)	Benign tumour, microscopic haematuria, meatal stenosis, phimosis.
	Autoimmune	3 (5%)	Lupus, juvenile rheumatoid.
	Diabetes	1 (2%)	Type 1 diabetes mellitus (insulin pump).
	Palliative care services	8 (15%)	Dementia, end-stage congenital heart disease context.
	Hospitalisation event during years of attending clinic	30 (56%)
	Deaths	10 (19%)	Eight end stage dementia, one end stage congenital heart disease, one aspiration.

Table 2b. Audit data from cohort of all adult patients with Down syndrome attending a mainstream internal medicine outpatient clinic for comprehensive health care over a 10-year period: intellectual disability, disability supports, disability sector.

Intellectual disability, disability supports profile
Item		Total = 54 Number, n (%)
Disability support pension		54 (100%)
NDIS* participant		53 (98%)
Accommodation
	Family	33 (61%)
	Supported accommodation	21 (39%)
Assessment of intellectual disability
	Without formal scale	54 (100%)
	With additional formal scale	16 (30%)
Discussion on substitute decision maker (including supported decision making now)
	Health	54 (100%)
	Finances	27 (50%)
Impact of intellectual disability on outpatient healthcare access and participation
	Able to independently organise appointment	0 (%)
	Able to independently provide history without any disability support	0 (0%)
	Some difficulty with physical examination	15 (28%)**
	Some difficulty with venesection and basic imaging	13 (24%)***
	Average time required for all appointments to cover baseline comprehensive care after initial referral	3 h: 2 × 1 h, 2 × 30 min****
	Copy of completed comprehensive care assessment letter to referring doctor, to patient’s residence, to guardian, to other specialist (if relevant)	54 (100%)
	Easy-read version of letter to patient	0 (0%)
	Clinician requirement for reasonable adjustments to usual knowledge, content, process, organisation	54 (100%)
Disability supports for health
	Provision generally by family only	31 (57%)
	Provision generally by disability support workers only	5 (9%)
	Provision generally by both family and disability support workers	18 (33%)
	Requirement for some level of disability supports for healthcare	54 (100%)
	Discussion on disability supports planning in the event of ever needing hospitalisation	54 (100%)
	Disability-health interface
Relevance of disability- and NDIS*- sectoral regulations and standards*****
	Medications	54 (100%)
	Disability support for inpatient care (involving family and funded disability support workers)	23 (43%) current and 54 (100%) future planning
	Management of acute and chronic health issues at home, and during the day	54 (100%)
	Disability support for healthy living	54 (100%)

*National Disability Insurance Scheme.

**Three of those not possible even after several appointments.

***Five of those would require a general anaesthetic for combined tests done at opportunistic time (e.g., at dental review).

****“Baseline appointments” refers to set of four appointments required after initial referral; as required subsequent follow up appointments 30 min, and annual reviews 30–60 min duration (see Appendix 1).

*****Examples in Appendix 2.

ACSQHC. (2018). Implementing the comprehensive care standard: Assessment and diagnosis. ACSQHC.

 Google Scholar

ACSQHC. (2020a). Implementing the comprehensive care standard. Clinical assessment and diagnosis. https://www.safetyandquality.gov.au/sites/default/files/2020-08/acsqhc_cc_ee1_paper_online.pdf

 Google Scholar

ACSQHC. (2019a). Implementing the comprehensive care standard. Identifying goals of care. https://www.safetyandquality.gov.au/sites/default/files/2019-06/implementing-the-comprehensive-care-standard-identifying-goals-of-care-final-accessible-pdf-24-apr-2019.pdf

 Google Scholar

ACSQHC. (2019b). Implementing the comprehensive care standard. Risk screening and assessment. https://www.safetyandquality.gov.au/sites/default/files/2019-09/cc_factsheet_e3_risk_screening_and_assessment_for_clinicians_sep_2019.pdf

 Google Scholar

ACSQHC. (2019c). Implementing the comprehensive care standard. Develop a single comprehensive care plan. https://www.safetyandquality.gov.au/sites/default/files/2019-07/acsqhc_cc_ee4_paper_d4_amended_july_23.pdf

 Google Scholar

ACSQHC. (2020b). Implementing the comprehensive care standard. Deliver comprehensive care. https://www.safetyandquality.gov.au/publications-and-resources/resource-library/implementing-comprehensive-care-standard-deliver-comprehensive-care

 Google Scholar

ACSQHC. (2019d). Implementing the comprehensive care standard. Review and improve comprehensive care delivery. https://www.safetyandquality.gov.au/publications-and-resources/resource-library/implementing-comprehensive-care-standard-review-and-improve-comprehensive-care-delivery

 Google Scholar