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National Collaborating Centre for Cancer (UK). The Diagnosis and Treatment of Lung Cancer (Update). Cardiff (UK): National Collaborating Centre for Cancer (UK); 2011 Apr. (NICE Clinical Guidelines, No. 121.)

Cover of The Diagnosis and Treatment of Lung Cancer (Update)

The Diagnosis and Treatment of Lung Cancer (Update).

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9Follow-up and patient perspectives

Clinical topic: What is the most effective follow-up model for lung cancer patients?

This section refers to the review of patients following completion of treatment or where patients are given best supportive care. The value of follow-up in lung cancer includes monitoring of treatment outcomes and complications, detection of relapse and recurrence, detection and management of symptoms, provision of information and provision of supportive and palliative care. The emphasis on the purpose of follow-up will differ depending on which modality of treatment has been given. When treatment with curative intent has been given there will be more emphasis on detection of recurrent disease whereas if there has been active treatment with palliative intent there may be a focus on detection of disease progression and symptom control. If no active treatment has been offered then follow-up will be directed towards symptom control. The 2005 guideline included clinical practice recommendations on lung cancer follow-up and noted that there was a paucity of evidence in this field. Some recommendations from the 2005 guideline have been modified and included with the current recommendations.

Recommendations

  • Offer all patients an initial specialist follow-up appointment within 6 weeks of completing treatment to discuss ongoing care. Offer regular appointments thereafter, rather than relying on patients requesting appointments when they experience symptoms. [NEW 2011]
  • Offer protocol-driven follow-up led by a lung cancer clinical nurse specialist as an option for patients with a life expectancy of more than 3 months. [NEW 2011]
  • Ensure that patients know how to contact the lung cancer clinical nurse specialist involved in their care between their scheduled hospital visits. [NEW 2011]

Clinical evidence

The search conducted for this topic identified three retrospective studies of low quality (Nakamura et al., 2010; Virgo et al., 1995; Younes et al., 1999). In a sample of 1398 patients who had undergone surgery for NSCLC Nakamura et al. (2010) found that follow up by thoracic surgeons conferred an independent increased hazard of death relative to follow up by chest physicians. Virgo et al. (1995) examined in patients with stage I-IIIA lung cancer treated with curative intent whether a number of outcomes differed between those who received an intensive follow up schedule (N = 120) and those who received a non-intensive follow up schedule (N = 62). Length of follow up and baseline characteristics of the groups were comparable with the exception that the intensively followed up group had significantly more comorbidities and a significantly longer disease-free interval than the non-intensively followed up patients. Intensity of follow up did not significantly influence time to detection of local or regional recurrences, time to detection of second primary, time to detection of metastases, survival (for all patients or for stage I patients only), survival after detection of local or regional recurrence, survival after detection of second primary, survival after detection of metastases, local and regional recurrences, second primaries, metastases, and multiple metastases. In patients who had undergone complete operative and pathologic resection of non small cell lung cancer Younes et al. (1999) found that disease-free survival and survival after recurrence did not differ between patients who had followed a strict (N = 67) or symptom-based (N = 63) follow up schedule, but the patients who received symptom-based follow up experienced more (health problem) episodes detected in the emergency room, had more health problems treated on an inpatient basis and spent more days as an inpatient for health problems compared to the patients receiving a strict follow up schedule, who on the other hand had more health problems treated on an outpatient basis.

Health economic evaluation

This topic was a medium priority for health economic analysis because although intensive follow-up can be expensive, and also has a high opportunity cost, the health benefits of follow-up are difficult to ascertain and high quality clinical evidence is unlikely to be found. Therefore, because of feasibility concerns, no economic analysis was undertaken.

Qualifying statement

These recommendations are based on low quality comparative studies. The paucity of evidence precludes firm evidence-based recommendations. However the evidence did show that regular follow-up results in fewer crisis driven health related episodes. Such episodes are distressing to patients and carers not least because the emergency admission process is often difficult and in the UK at least, often leads to inpatient management by non-specialists. It is therefore likely that this recommendation will benefit patients and lead to more effective use of NHS resources. There were several studies identified that have looked at the use of specific interventions in the setting of follow-up. Unfortunately none of the studies is of sufficient quality to allow evidence based recommendations.

The issue of timing of follow-up remains unclear and hence the Guideline Development Group (GDG) made consensus recommendations.

Research Recommendations

Randomised controlled trials should be conducted to examine the value of imaging modalities and other interventions in the monitoring of response and recurrent disease. [NEW 2011]

Randomised controlled trials should be conducted examining the value of different follow-up patterns. [NEW 2011]

The use of prognostic factors to develop risk stratification models to determine the optimal follow-up pattern should be examined as part of large clinical trials. [NEW 2011]

9.1. The Patient's Perspective

The Department of Health publication recommended that services be ‘patient centred’. This document paved the way for cancer patient involvement in service provision.1 Recently strategies have been produced, setting a framework to achieve this. In England, the relevant document is Involving Patients and the Public in Healthcare (2001) and in Wales, Signposts – A Practical Guide to Public and Patient Involvement in Wales (2001). These strategies underline the benefits of service user involvement in improving outcomes of health care, increasing patient satisfaction and in strengthening public confidence in the NHS. They provide a framework for patients and the public to be involved both at a collective /strategic level and on an individual basis.

Involvement in service provision is, broadly speaking,achieved in two ways:

  • Patient consultation through surveys and questionnaires or through patient focus groups.
  • Active partnership with user representatives as members of committees or working groups.

Although lung cancer is the most common cancer diagnosis in the UK, there are currently very few patient representatives involved in service planning and delivery. There are, inherent within this disease, a number of barriers to such patient involvement. With a median survival of four months from diagnosis, around 80% of patients are dead at one year, with only around 7% surviving five years, the average lung cancer patient may not survive the length of the working group. Furthermore, as most people with lung cancer are not only elderly but also less fit than their contemporaries, often suffering from smoking-related illnesses, they may be too ill to attend meetings.

However, certain organisations (such as the Roy Castle Lung Foundation and Macmillan Cancer Support are involved in patient advocacy issues for lung cancer patients and endeavour to harness the spectrum of patient views with an eye to shaping future cancer services and research.

9.1.1. Lung Cancer Patient Opinions

Within the NHS, the experiences and needs of patients and families living with a diagnosis of lung cancer have been collected in the following initiatives:

Cancer Service Patient Survey

In July 2002 a survey on cancer services eliciting the views of more than 65,000 patients (74% of those approached), was published. 4,000 (6%) of respondents were lung cancer patients. The survey showed that, in most cases, patients were receiving high levels of care - for example, 86% had complete confidence in their doctors; 79% felt they were treated with respect and dignity at all times. However, the survey highlighted variations between Trusts.

The patients surveyed came from 172 NHS Trusts in England and questions related to care received between July 1999 and June 2000. As the National Cancer Plan (2000) was published after the survey was carried out, the findings will act as a baseline, upon which improvements can be measured at the individual Trust level. Of the 65,000 views, only 4000 (6%) were from lung cancer patients.

Patient Reported Outcomes (PROMS)

PROMs are wider than patient experience of care and include measures of activity, specific symptoms, longer term effects of treatment and comprehensive tools to measure quality of life (QOL). Apart from QOL measures (which are difficult to use in routine clinical practice) there are no validated PROMs for lung cancer despite the fact that they could be key to understanding, monitoring and ensuring that patients have the best possible outcomes of care over and above simple survival. PROMs have yet to be developed for specific cancers and perhaps specific treatment groups. There is an urgent need for the development and validation of useful PROMs for lung cancer.

Cancer Services Collaborative Patient Experience Projects

In England, as part of the Cancer Services Collaborative, a number of projects have measured how patients rate their care and have monitored the impact of system changes. A key area has been to improve communication between patients and their clinical team. This has been achieved in a variety of ways, including written patient information booklets, patient held records and taped consultations. The Service Improvement Manuals (produced by the NHS Modernisation Agency), including the Lung Cancer Manual, give details of individual projects and how changes have resulted in improvement.

Patients with lung cancer have reported experiencing greater levels of unmet psychological, social and economic needs than other cancer groups. They have also been less satisfied, than other people with cancer, with the care received. A national needs assessment of lung cancer patients and carers, undertaken on behalf of Macmillan Cancer Support, identified a myriad of deficiencies in the organisation of care delivery and in areas of information and support.

As part of this Guideline process, The Roy Castle Lung Cancer Foundation (RCLCF), in association with the National Collaborating Centre for Acute Care, collected experiences and opinions from 61 lung cancer patients and carers. Full details of this are available on the RCLCF website (www.roycastle.org). General themes expressed by this group, on the organisation of services, included:

  • Accessing services – respondents expressed a desire to have speedy access to specialist services, with the overwhelming majority favouring the rapid access diagnostic clinic approach. Many also reported a willingness to travel considerable distances to access the most specialist services.
  • Respondents also placed emphasis on seeing the same doctor at every hospital visit.
  • The importance of accessing a lung cancer support nurse, throughout the treatment journey.
  • Continuing care – Few in this group had accessed community based support services, those who did rated them highly.

More work is needed to establish the specific opinions of lung cancer patients and carers, on the organisation of lung cancer services.

9.1.2. Monitoring the Effects of Patient Involvement

As with the Cancer Services Collaborative Patient Experience Projects, there are many individual examples of patient views being surveyed and the results contributing to service changes in a number of settings. There is, however, no evidence of such involvement directly improving the quality of care or the outcome for patients. The challenge, therefore, as lay involvement continues to be embedded within health services, is to ensure that it is appropriate, representative and having its impact monitored.

The review of NHS Cancer Care in England and Wales, published in December 2001 and undertaken by the Commission for Health Improvement (CHI) and the Audit Commission (AC), concluded that cancer services still have a long way to go before they are truly ‘patient focused’. This review, however, only addressed the progress in implementing recommendations of the 1995 Calman-Hine report, A Policy Framework for Commissioning Cancer Services. It did not take into account the multiple policy changes and initiatives, which have taken place in the intervening years.

At a local level, systems need to be in place to ensure that the opinions and experiences of lung cancer patients and carers are collected. Further work is needed to ensure that such patient involvement is meaningful and that lung cancer services improve as a result. The GDG made a good practice point that the opinions and experiences of lung cancer patients and carers should be collected and used to improve the delivery of lung cancer services. Patients should receive feedback on any action taken as a result of such surveys.

Recommendation

  • The opinions and experiences of lung cancer patients and carers should be collected and used to improve the delivery of lung cancer services. Patients should receive feedback on any action taken as a result of such surveys. [2005]

References

  • Nakamura R, Kurishima K, Kobayashi N, Ishikawa S, Goto Y, Sakai M, Onizuka M, Ishikawa H, Satoh H, Hizawa N, Sato Y. Postoperative Follow-Up for Patients with Non-Small Cell Lung Cancer. Onkologie. 2010;33(1-2):14–18. [PubMed: 20164657]
  • Virgo KS, McKirgan LW, Caputo MCA, Mahurin DM, Chao LC, Caputo NA, Naunheim KS, Flye MW, Gillespie KN, Johnson FE. Posttreatment Management Options for Patients with Lung-Cancer. Annals of Surgery. 1995;222:700–710. [PMC free article: PMC1235018] [PubMed: 8526576]
  • Younes RN, Gross JL, Deheinzelin D. Follow-up in lung cancer: how often and for what purpose? Chest. 1999;115:1494–1499. [see comment] [PubMed: 10378539]

Department of Health (2007) World class commissioning. Vision. London. Department of Health. Available from http://www​.dh.gov.uk​/en/Publicationsandstatistics​/Publications​/PublicationsPolicyAndGuidance​/DH_080956

Footnotes

1

Department of Health (2007) World class commissioning. Vision. London. Department of Health. Available from http://www​.dh.gov.uk​/en/Publicationsandstatistics​/Publications​/PublicationsPolicyAndGuidance​/DH_080956

Copyright © 2011, National Collaborating Centre for Cancer.

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