Electronic care coordination systems for people with advanced progressive illness: a mixed-methods evaluation in Scottish primary care.

BACKGROUND: Electronic care coordination systems, known as the Key Information Summary (KIS) in Scotland, enable the creation of shared electronic records available across healthcare settings. A KIS provides clinicians with essential information to guide decision making for people likely to need emergency or out-of-hours care. AIM: To estimate the proportion of people with an advanced progressive illness with a KIS by the time of death, to examine when planning information is documented, and suggest improvements for electronic care coordination systems. DESIGN AND SETTING: This was a mixed-methods study involving 18 diverse general practices in Scotland. METHOD: Retrospective review of medical records of patients who died in 2017, and semi-structured interviews with healthcare professionals were conducted. RESULTS: Data on 1304 decedents were collected. Of those with an advanced progressive illness (79%, n = 1034), 69% (n = 712) had a KIS. These were started a median of 45 weeks before death. People with cancer were most likely to have a KIS (80%, n = 288), and those with organ failure least likely (47%, n = 125). Overall, 68% (n = 482) of KIS included resuscitation status and 55% (n = 390) preferred place of care. People with a KIS were more likely to die in the community compared to those without one (61% versus 30%). Most KIS were considered useful/highly useful. Up-to-date free-text information within the KIS was valued highly. CONCLUSION: In Scotland, most people with an advanced progressive illness have an electronic care coordination record by the time of death. This is an achievement. To improve further, better informal carer information, regular updating, and a focus on generating a KIS for people with organ failure is warranted.

Proactive cancer care in primary care: a mixed-methods study.

BACKGROUND: Current models of post-treatment cancer care are based on traditional practices and clinician preference rather than evidence of benefit. OBJECTIVES: To assess the feasibility of using a structured template to provide holistic follow-up of patients in primary care from cancer diagnosis onwards. METHODS: A two-phase mixed methods action research project. An electronic cancer ongoing review document (CORD) was first developed with patients and general practitioners, and used with patients with a new diagnosis of cancer. This was evaluated through documentary analysis of the CORDs, qualitative interviews with patients, family carers and health professionals and record reviews. RESULTS: The records of 107 patients from 13 primary care teams were examined and 45 interviews conducted. The document was started in 54% of people with newly diagnosed cancer, and prompted clear documentation of multidimension needs and understanding. General practitioners found using the document helped to structure consultations and cover psychosocial areas, but they reported it needed to be better integrated in their medical records with computerized prompts in place. Few clinicians discussed the review openly with patients, and the template was often completed afterwards. CONCLUSIONS: Anticipatory cancer care from diagnosis to cure or death, 'in primary care', is feasible in the U.K. and acceptable to patients, although there are barriers. The process promoted continuity of care and holism. A reliable system for proactive cancer care in general practice supported by hospital specialists may allow more survivorship care to be delivered in primary care, as in other long-term conditions.

Urgent suspected cancer referrals from general practice: audit of compliance with guidelines and referral outcomes.

BACKGROUND: Late diagnosis contributes to the UK having poorer cancer survival than many countries in Europe. Cancer referral guidelines help GPs decide which patients to refer urgently for further investigation. AIM: To examine primary care referral patterns, compliance with referral guidance, and eventual outcome for patients. DESIGN AND SETTING: Prospective audit within general practice in Scotland. METHOD: GPs in Scotland reviewed all urgent suspected cancer referrals over a 6-month period. They noted the final diagnosis and assessed whether the referral was in accordance with agreed referral guidelines. RESULTS: A total of 18 775 urgent suspected cancer referrals were analysed from 516 GP practices. The referral rate ranged from 3.7 to 24.0 per 1000 per annum; 30.8% of referrals were for patients aged under 50 years, yet this age group accounts for only 11.1% of all diagnosed cancers; 10.3% of all urgent cancer referrals were for suspected melanoma, despite this cancer accounting for only 4.1% of new cancers. The proportion of patients subsequently diagnosed with cancer was greatest for leukaemia (61.7%), prostate (52.6%), and lung cancer referrals (39.7%), and lowest for melanoma (11.8%), oesophago-gastric (11.2%), brain (10.6%), and laryngeal cancer referrals (7.8%). Compliance with referral guidelines was 90.9%. A large proportion of referrals considered to be outside the guidelines still had a cancer diagnosed (urological 15.9%, lung 8.8%, colorectal 8.4%, and breast 6.4%). CONCLUSION: There is wide variation in GP referral rates for suspected cancer with a greater than expected proportion of referrals for younger people. Many referrals considered to be outside the national guidelines were diagnosed with cancer, suggesting factors other than those in referral guidelines alert GPs to the possibility of cancer.