Multiple Conditions in Later Life PSP Protocol

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Published: 29 January 2024

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Purpose of the PSP and background

The purpose of this protocol is to set out the aims, objectives and commitments of the James Lind Alliance (JLA) Multiple Conditions in Later Life Priority Setting Partnership (PSP) and the basic roles and responsibilities of the partners therein. It is recommended that the Protocol is reviewed by the Steering Group and updated on at least a quarterly basis.

The James Lind Alliance (JLA) is a non-profit making initiative, established in 2004. It brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs). These partnerships identify and prioritise uncertainties, or ‘unanswered questions’, about the effects of treatments that they agree are the most important. The aim of this is to help ensure that those who fund health research are aware of what really matters to both patients and clinicians. The National Institute for Health and Care Research (NIHR) funds the infrastructure of the JLA to oversee the processes for priority setting partnerships.

In Europe there are around 50 million people living with multiple conditions, many of whom are older. The management of multiple conditions (multimorbidity) in older people, and for them to be able to live well, represents an enormous challenge for health and social care. Across the globe, for most nations, regardless of their geographic location or developmental stage, population ageing and the associated multimorbidity is a key issue. In Europe (for example) the 85+ age group is growing faster than any other. People living with multiple conditions have a high treatment burden in terms of understanding and self-managing their conditions; they often need to attend multiple appointments and manage a multitude of drug and lifestyle management regimens.

Multimorbidity is a distinct and important concept. However the presence of multiple conditions in old age is often co-associated with the presence of frailty, or disability. Each of these concepts is distinct and defined - for example using Fried or Rockwood criteria for frailty, and definitions covering impairments, activity limitations, and participation restrictions for disability. While the focus of this PSP is on living well with multiple conditions in older age, it will inevitably need to take account of these important co-factors for an ageing population.

Newcastle University has an outstanding track record of supporting outstanding researchers in world class facilities and conducting leading edge research in the theme of Ageing. The Newcastle 85+ Study is the biggest and most comprehensive population-based longitudinal study of health and ageing in the over-85s anywhere in the world. The study recruited 1,042 85 year olds in 2006 and continues to provide new insights into health factors as the population becomes older. It is a flagship programme for Newcastle University and the most developed study of its kind in the world. There have been four sweeps of data collection since 2006, and a further 10 year follow up study is taking place during 2016. Over 90% of the participants had multimorbidity at inception and the median number of conditions was 4.

Recent developments which underpin Newcastle’s reputation in this field include the award of the National Innovation Centre for Ageing, our membership of the School for Primary Care Research and the NIHR Newcastle Biomedical Research Centre in Ageing and Long-Term Conditions. As part of the NIHR Clinical Research Network, we host the NIHR cluster theme on Ageing, Dementias, Neurodegenerative Disease, Neurological Disorders and Genetics. Each of the components of “one NIHR” in Newcastle is contributing to this exciting opportunity to work with patients, clinicians and the JLA on this Multiple Conditions in Later Life PSP.

Aims and objectives of the Multiple Conditions in Later Life PSP

The aim of the Multiple Conditions in Later Life PSP is to identify uncertainties about interventions (i.e. treatment, management, care and support) from patient and clinical perspectives and then prioritise those that patients, their informal carers/relatives and health and social care professionals agree are the most important.

The objectives of the Multiple Conditions in Later Life PSP are to:

  • work with patients, informal carers/relatives and health and social care professionals to identify uncertainties about interventions (i.e. treatment, management, care and support) that enable people to live well with multiple conditions in later life and to agree by consensus a prioritised list of those uncertainties, for research
  • to publicise the results of the PSP and process
  • to take the results to research commissioning bodies to be considered for funding.

Following discussions, the steering group agreed that the PSP will target people aged 80+ and their informal carers/relatives, as well as the health and social care professionals working with them. The 80+ population and carers/relatives will be identified through patient organisations, Care Alliances, Care Homes, online media, Voice North and through working with Age UK and partner organisations.

The 80+ age group has been chosen as the focus of this PSP for two main reasons. In the Newcastle 85+ Study the median number of conditions per participant was 5 for women and 4 for men. In the Age UK almanac of disease profiles in later life the age group in which 50% of the people in the survey had 3 or more health conditions was 80-84 years. Taken together this data suggests to us that people aged 80 years and over with 3 or more conditions is an appropriate target population for this PSP.

The PSP is targeting people aged 80+ with three or more conditions that are impacting on their health, wellbeing and ability to live well. We will also involve their informal carers/relatives. Other participants in the PSP will include health and social care professionals. The PSP is not prescriptive as to what these conditions or issues might be, but a list of potential topics is included at Appendix A as an illustrative guide.

Limitations and risks

The JLA Multiple Conditions in Later Life PSP is novel and is extremely complex. It is not condition-specific and it involves a stakeholder group that can be challenging to reach and involve. Maintaining focus and being clear about scope and objectives is especially important.

Risks include the time taken to complete the PSP and the required resource. We have created a project timeline and the PSP will be project managed with the intention of ensuring project milestones are achieved on time and to budget. This will be regularly reviewed by the Steering Group and additional funding will be actively pursued if necessary.

The Steering Group

The Multiple Conditions in Later Life PSP will be led and managed by the following:

  • Dr Clare Abley, Honorary Clinical Senior Lecturer, Newcastle University
  • Dr Louise Allan, Clinical Senior Lecturer/Consultant, Newcastle University
  • Libby Archer, Research Manager, Operations in the Policy and Research Department at Age UK
  • Helen Atkinson, Engagement Project Manager, Newcastle University
  • Dr Lynne Corner, Director of Engagement, Faculty of Medical Sciences, Newcastle University
  • Katherine Cowan, Senior Adviser, James Lind Alliance
  • Dr Joanna Collerton, Frail Elderly Lead, Academic Health Science Network, North East and North Cumbria
  • Dr Dawn Craig, Principal Scientist (Evidence Synthesis), Newcastle University
  • Dr James Frith, NIHR Clinician Scientist, Senior Clinical Lecturer, Consultant Physician, Newcastle University
  • David Innes, Lay Representative
  • Professor Carol Jagger, AXA Professor of Epidemiology of Ageing, Newcastle University
  • Professor Oliver James, Medical Director, Academic Health Science Network, North East and North Cumbria
  • Dr Gary Nestor, Assistant Speciality Cluster Lead, NIHR Clinical Research Network
  • Professor Julia Newton, Director of Newcastle Academic Health Partners & Clinical Professor of Ageing and Medicine, Newcastle University
  • Professor Stuart Parker, Professor of Geriatric Medicine, Newcastle University
  • Dr Steve Parry, Clinical Senior Lecturer/Consultant, Newcastle University
  • Professor Louise Robinson, Director, Newcastle University Institute for Ageing and Professor of Primary Care and Ageing
  • Professor Helen Rodgers, Professor of Stroke Care, Newcastle University and President, British Association of Stroke Physicians
  • Professor Avan Sayer, Director NIHR Newcastle Biomedical Research Centre and Professor of Geriatric Medicine

The Partnership and the priority setting process will be supported and guided by:

  • The James Lind Alliance (JLA)
  • Katherine Cowan, Senior Adviser, James Lind Alliance

The Steering Group includes representation of patient/carer groups and clinicians. The Steering Group will agree the resources, including time and expertise that they will be able to contribute to each stage of the process. The JLA will advise on this.

Reference Group

This group will be formed of patients, family members and carers and includes members of Voice North. It is anticipated that there will be circa 15 members and two nominees from this group will be selected to feed in to the Steering Group. The reference group is a mechanism to enable patients and carers to be actively involved in the management of the PSP.

The Partners

Organisations and individuals will be invited to be involved with the PSP as partners. Partners are groups or individuals who will commit to supporting the PSP by disseminating the PSP survey and helping the PSP to gather questions and uncertainties of practical clinical importance relating to the treatment and management of the health problem in question. Partners represent the following groups:

  • people aged 80+ who have multiple conditions or health problems and the groups/organisations that represent them
  • relatives and informal carers of people aged 80+ who have multiple conditions or health problems and the groups/organisations that represent them
  • health and social care professionals with experience of working with people aged 80+ with multiple conditions or health problems

It is important that all organisations which can reach and advocate for these groups should be invited to become involved in the PSP. The JLA Adviser will take responsibility for ensuring the various stakeholder groups are able to contribute equally to the process.

Exclusion criteria

Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to adversely affect those organisations’ views, causing unacceptable bias. As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.

The methods the PSP will use

This section describes a schedule of proposed stages through which the PSP aims to fulfil its objectives. The process is iterative and dependent on the active participation and contribution of different groups. The methods adopted in any stage will be agreed through consultation between the Steering Group members, guided by the PSP’s aims and objectives. More details can be found in the Guidebook section of the JLA website where examples of the work of other JLA PSPs can also be seen.

Step 1: Identification and invitation of potential partners

Potential partner organisations will be identified through a process of peer knowledge and consultation, through the Steering Group members’ networks. Potential partners will be contacted and informed of the establishment and aims of the Multiple Conditions in Later Life PSP and may be invited to attend and participate in an initial stakeholder meeting if this is being arranged.

Step 2: Initial awareness raising

The initial awareness raising will have several key objectives:

  • to identify and engage potential members of the Multiple Conditions in Later Life PSP
  • to present the proposed plan for the PSP
  • to initiate discussion, answer questions and address concerns

Step 3: Identifying intervention (i.e. treatment, management, care and support) uncertainties

The Steering Group will produce a means of consulting older people, relatives/informal carers and health and social care professionals to identify uncertainties about interventions (i.e. treatment, management, care and support) that enable people to live well with multiple conditions in later life. This will allow scope for partner organisations to employ their own methods for reaching the stakeholder groups, whilst ensuring consistency between stakeholders by using the framework, agreed by the Steering Group.

The method of consultation must be transparent and inclusive and endeavour to reach as representative a range of participants as practicable.

Existing sources of information about intervention (i.e. treatment, management, care and support) uncertainties for patients and clinicians will be searched. This will include existing priorities identified by other JLA PSPs as well as research recommendations in systematic reviews and clinical guidelines, protocols for systematic reviews being prepared and registers of ongoing research.

The starting point for identifying sources of uncertainties and research recommendations is NHS Evidence.

Step 4: Refining questions and uncertainties

The Steering Group will need to have agreed exactly who will be responsible for this stage – the JLA can advise on the amount of time likely to be required for its execution. The JLA will participate in this process as an observer, to ensure accountability and transparency.

The consultation process will produce “raw” unanswered questions about diagnosis and the effects of interventions (i.e. treatment, management, care and support). These raw questions will be assembled and categorised and refined into “collated indicative questions” which are clear, addressable by research and understandable to all. Similar or duplicate questions will be combined where appropriate.

Systematic reviews and guidelines will be identified and checked to see to what extent these refined questions have, or have not, been answered by previous research. Sometimes, uncertainties are expressed that can in fact be resolved with reference to existing research evidence - ie they are "unrecognised knowns" and not uncertainties. If a question about intervention (i.e. treatment, management, care and support) effects can be answered with existing information but this is not known, it suggests that information is not being communicated effectively to those who need it. Accordingly, the JLA recommends strongly that PSPs keep a record of these 'answerable questions' and deal with them separately from the 'true uncertainties' considered during the research priority setting process.

Uncertainties which are not adequately addressed by previous research will be collated and recorded on a template supplied by the JLA. This will demonstrate the checking undertaken to make sure that the uncertainties have not already been answered. This is the responsibility of the Steering Group, which will need to have agreed personnel and resources to carry this accountability. The data should be submitted to the JLA for publication on its website on completion of the priority setting exercise, taking into account any changes made at the final workshop, in order to ensure that PSP results are publicly available.

Step 5: Prioritisation – interim and final stages

The aim of the final stage of the priority setting process is to prioritise through consensus the identified uncertainties relating to interventions that enable people to live well with multiple conditions in later life. This will be carried out by members of the Steering Group and the wider partnership that represents older people, carers/relatives and health and social care professionals.

  • The interim stage, to proceed from a long list of uncertainties to a shorter list to be discussed at the final priority setting workshop (e.g. up to 30), may be carried out over email or online or in other appropriate ways, whereby organisations consult their membership and choose and rank their top 10 most important uncertainties. There are examples of how other PSPs have achieved this on the JLA website.
  • The final stage, to reach, for example, 10 prioritised uncertainties, is likely to be conducted in a face-to-face meeting, using group discussions and plenary sessions, or other means if deemed more appropriate and accessible.

The JLA will facilitate this process and ensure transparency, accountability and fairness. Participants will be expected to declare their interests in advance of the final prioritisation exercise.

Dissemination of findings and research

Findings and research

It is anticipated that the findings of the Multiple Conditions in Later Life PSP will be reported to funding and research agenda setting organisations such as the NIHR and the major research funding charities. Steering Group members and partners are expected to develop the prioritised uncertainties into research questions, and to work to establish the research needs of those unanswered questions to use when approaching potential funders, or when allocating funding for research themselves, if applicable.

Publicity

As well as alerting funders, partners and Steering Group members are encouraged to publish the findings of the Multiple Conditions in Later Life PSP using both internal and external communication mechanisms. The Steering Group may capture and publicise the results through descriptive reports of the process itself in Plain English. This exercise will be distinct from the production of an academic paper, which the partners are also encouraged to do. However, production of an academic paper should not take precedence over publicising of the final results.

Agreement of the Steering Group

Approved by the Steering Group

The Steering Group has agreed to follow the Multiple Conditions in Later Life Priority Setting Protocol.

Appendix 1

The JLA Multiple Conditions in Later Life PSP anticipates that the following long term conditions, issues and health problems may be referred to during the consultation phase. This list is for illustrative purposes only and is not intended to limit the issues which participants bring to the process.

  • Allergy
  • Anaemia
  • Asthma
  • Atrial fibrillation
  • Autoimmune diseases
  • Blindness, visual impairment
  • Blood and blood forming organ diseases
  • Bradycardias and conduction diseases
  • Cancer within 5 years
  • Cardiac valve diseases
  • Cataract and other lens diseases
  • Cerebrovascular disease
  • Chronic ulcer of the skin
  • Colitis and related diseases
  • COPD, emphysema, chronic bronchitis
  • Chromosomal abnormalities
  • Chronic infectious diseases
  • Chronic Kidney diseases
  • Chronic Liver diseases
  • Chronic pancreas, biliary tract and gallbladder diseases
  • Deafness, hearing impairment
  • Dementia
  • Depression and mood diseases
  • Diabetes
  • Dorsopathies
  • Dyslipidaemia
  • Ear, nose, throat diseases
  • Epilepsy
  • Falls
  • Glaucoma
  • Hearing impairment
  • Haematological neoplasms
  • Heart failure
  • High Blood Pressure
  • Hypertension
  • Incontinence
  • Inflammatory arthropathies
  • Inflammatory bowel disease
  • Ischaemic Heart disease
  • Learning disabilities
  • Mental health
  • Migraine and facial pain syndrome
  • Multiple sclerosis
  • Neurotic, stress-related and somatoform diseases
  • Obesity
  • Oesophagus, stomach, and duodenum diseases
  • Other skin diseases
  • Osteoarthritis and other degenerative joint diseases
  • Other cardiovascular diseases
  • Other digestive diseases
  • Other eye diseases
  • Other genitourinary diseases
  • Other metabolic diseases
  • Other musculoskeletal and joint diseases
  • Other neurological diseases
  • Other respiratory diseases
  • Other psychiatric and behavioural diseases
  • Parkinson and parkinsonism
  • Peripheral arterial disease
  • Peripheral neuropathy
  • Peripheral vascular disease
  • Prostate diseases
  • Respiratory Disease - Chronic obstructive pulmonary disease, chronic bronchitis or asthma (excluding childhood asthma)
  • Schizophrenia and delusional diseases
  • Sleep disorders
  • Solid neoplasms
  • Stroke/Transient Ischaemic Attack
  • Thyroid Diseases
  • Venous and lymphatic diseases
  • Visual impairment