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Implementation of the Needs Assessment Tool for patients with interstitial lung disease (NAT:ILD): facilitators and barriers
  1. C Reigada1,
  2. A Papadopoulos2,
  3. J W Boland1,
  4. J Yorke3,4,
  5. J Ross5,
  6. D C Currow1,6,
  7. S Hart1,
  8. S Bajwah7,
  9. G Grande3,
  10. A Wells8,
  11. M J Johnson1
  1. 1 Hull York Medical School, University of Hull, Hull, UK
  2. 2 Kent Business School, University of Kent, Canterbury, Kent, UK
  3. 3 Division of Nursing, Midwifery and Social Work, School of Health Sciences, University of Manchester, Manchester, UK
  4. 4 The Christie NHS Foundation Trust, Manchester, UK
  5. 5 St Christopher's Hospice, Sydenham, Kent, UK
  6. 6 University of Technology, Sydney, Australia
  7. 7 Cicely Saunders Institute, King's College London, London, UK
  8. 8 Royal & Harefield Trust Foundation, London, UK
  1. Correspondence to Professor M J Johnson, Hull York Medical School, University of Hull, Hertford Building, Hull HU6 7RX, UK; miriam.johnson{at}hyms.ac.uk

Abstract

A Needs Assessment Tool (NAT) was developed previously to help clinicians identify the supportive/palliative needs of people with interstitial lung disease (ILD) (NAT:ILD). This letter presents barriers and facilitators to clinical implementation. Data from (1) a focus group of respiratory clinicians and (2) an expert consensus group (respiratory and palliative clinicians, academics, patients, carers) were analysed using Framework Analysis. Barriers related to resources and service reconfiguration, and facilitators to clinical need, structure, objectiveness, flexibility and benefits of an ‘aide-memoire’. Identified training needs included communication skills and local service knowledge. The NAT:ILD was seen as useful, necessary and practical in everyday practice.

  • Palliative Care
  • Interstitial Fibrosis

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Introduction

The Needs Assessment Tool:Progressive Disease-Cancer (NAT:PD-C) was developed to help non-palliative care clinicians identify supportive and palliative needs of people with cancer and their informal carers. It reduced unmet needs without increasing consultation time.1

In response to unmet supportive and palliative care needs of people with interstitial lung disease (ILD)2 ,3 and national guidance,4 the NAT:PD-C was adapted for people with ILD (NAT:ILD).5 It prompts clinicians to assess in four sections the holistic needs of patient well-being (one section), their informal carers' needs (two sections) with additional prompts for information needs and triage for specialised palliative care.

We aimed to identify facilitators and barriers affecting potential clinical implementation of the NAT:ILD.

Methods

We used a qualitative approach, with a focus group and an expert consensus group.5

Participants and sampling strategy

Focus group

A convenience sample of ILD clinicians at one tertiary referral centre was invited. The clinical service had links with the palliative care breathlessness intervention service but a palliative specialist was not part of the ILD multidisciplinary team (MDT).

Expert consensus group

Participants, from hospital and community settings, comprised ILD and general respiratory clinicians (doctors, nurses, physiotherapists); patients and carers; and research team members.

Data collection

The facilitator (MJJ) led both groups through the tool to explore face and content validity. Unprompted comments about implementation arose during discussion, then broad questions were asked about factors that would facilitate or hinder implementation in clinical practice (facilitated by AP). Groups were video and audio-recorded and contemporaneous field notes taken (JB).

Analysis

Framework Analysis was used6 with anonymised transcripts coded (CR, AP), an analytical framework developed and themes generated. Video observations using cognitive mapping7 and field notes helped interpretation. Data were managed using NVivo Software (QSR International, V.10, 2012). The pragmatic sample size achieved coding and thematic saturation.

Ethics

This was part of a larger adaptation and validation project, approved by NRES (14/NE/0127) and each institution. Focus group participants gave written consent; this was not required for the expert consensus group.

Results

Sample characteristics

Eight clinicians took part in the focus group: three consultants, three specialist respiratory trainee physicians (5–8 years post-qualification), an ILD respiratory nurse specialist and a specialist physiotherapist. The expert consensus group consisted of clinical academics (n=4), physicians (n=5), nurses (n=3), patients (n=4) and carers (n=2).5 Each lasted approximately 90 min.

Main findings

Two main themes were identified: clinical issues (table 1) and practical issues (table 2).

Table 1

Clinical issues

Table 2

Practical issues

Clinical issues

Issues relating to the clinical interaction between patient and clinician could influence the willingness or ability of clinicians to use the tool. These were gaining better knowledge about patient and carer particularly in the ‘non-medical’ aspects; inadequate communication skills to assess psycho-social concerns and whether or not the NAT-ILD was beneficial for patients (table 1).

Practical issues

Facilitators that increased willingness to use the tool included (1) the tool being clear, concise and a consultation guide rather than a questionnaire or outcome measure, and (2) training to address skill gaps in holistic assessment (table 2).

Barriers included service structures (time constraints) and resources (availability). Cultural competence, whereby routine enquiry about psychosocial and spiritual well-being is legitimised, was highlighted, together with training to enable holistic assessment (table 2).

Reflections from video recordings

There were few blocking body postures even when discussing barriers, reflecting the overall wish of participants to find solutions. The exception was when discussing time constraints of busy clinics; a sense of resignation or nihilism was shown by some participants until challenged and solutions proposed by others in the group.

Discussion

The NAT:ILD was seen as a practical way to address the unidentified, unaddressed serious palliative and supportive care concerns of patients and carers. Participants identified gaps in clinical and communication skills, limited resources and need for culture change. Implementation challenges were delineated, but presented alongside potential solutions. The greatest concerns related to confidence and time constraints to assess psychosocial and spiritual need.

People with ILD have significant palliative and supportive care needs2 for which there are effective interventions.8 Despite this, palliative care access is rare; only 3% in a recent interstitial pulmonary fibrosis registry report.9

Multidisciplinary care and excellent communication skills are the accepted service model for cancer services. Communication skills training delivers sustainable improvements in clinical practice10 but is not standard for respiratory clinicians unlike oncology and palliative teams in the UK.

Organisational and logistic factors were barriers to implementation. A change in service configuration to interdisciplinary clinics would be optimal. The NAT:-ILD may provide a tool to support implementation of new practices into daily care, catalyse service configuration change to a more patient-centric approach and facilitate multiprofessional working.

Strengths and limitations

Audio and visual recording helped interpretation of responses, particularly whether barriers were potentially surmountable.

As with all qualitative work, findings should be interpreted within the service context; this team liaised regularly with the palliative care breathlessness clinic. Other services may be less confident identifying symptoms without such support.

No clinician had used the NAT:ILD in practice. A subsequent dissemination workshop including clinicians with experience in practice upheld the findings (data available on request).

Implications for clinical practice

These clinicians were aware of the wider impact of ILD on patients and their carers. Discomfort assessing psychosocial and spiritual concerns stemmed from feeling (1) unsure what/how to ask and (2) ill-equipped to manage emerging problems. Training in assessment, a basic palliative approach and communication skills, and service reconfiguration with identification of referral pathways for specialist concerns is needed. A team relationship with palliative care services would be an initial step in mutual education, training and support leading to a positive culture change.

Conclusion

Participants recognised that the NAT:ILD could help improve care of patients and carers, but were concerned about limited time and skills. Participants identified solutions including training in psychosocial/spiritual assessment and symptom management, support from other disciplines (palliative care and psychology) and MDT engagement and ways to overcome some barriers within resources. However, service development and additional resources may be required for optimal implementation of the NAT:ILD.

Acknowledgments

The authors thank the patients, carers and clinicians who took part in this study for their time and insights.

References

Footnotes

  • Contributors MJJ and DCC conceived the project and design. MJJ, DCC, JY, JR, GG, AP, JWB and AW contributed to the design. MJJ, JWB, AP, SH, CR and JY collected the data. CR and TP conducted the analysis. CR drafted the first manuscript. All authors contributed to data interpretation, contributed to and agreed the final manuscript.

  • Funding This study was funded by the Marie Curie Research Grants Scheme, Grant C30598/A16976.

  • Competing interests None declared.

  • Ethics approval NRES Committee North East—Sunderland 14/NE/0127.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Researchers may request anonymised data from MJJ.