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The 20/20 Vision for Cancer Project



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On the eve of Daffodil Day, the 24 August 2012, Cancer Council Australia launched a world-first study: The 20/20 Vision for Cancer Project. This online survey aimed to further our understanding of quality of life and the significance of existential wellbeing for those affected by cancer. Anyone could take part including cancer patients and survivors, their informal carers, cancer health professionals, and others from the general community. The study closed to any new participants on the 28 February 2015, following 2 ½ years of data collection.

We had an impressive response to the project with 2,475 individuals taking part following media releases to the Australian community, requests by cancer organisations, or requests by The University of Adelaide, our project partner. Of those who took part through community channels (1,706 people), a substantial 67% also took part in a 6 month follow-up survey.

This unique project, built on more than 15 years of research on quality of life, spiritual wellbeing, and hope was designed and conducted by Cancer Council Australia’s behavioural researcher, Dr Hayley Whitford, and Cancer Council Australia’s former CEO, Professor Ian Olver. It was the first of its kind to assess positive spiritual domains such as love, connectedness, forgiveness, gratitude, appreciation, and compassion to further our research into peace, meaning, and faith and how they impact people’s resilience to depression and anxiety, and their clinical symptoms, throughout the cancer journey.

This study was also unique as it aimed to compare the experiences of people at different stages of the cancer journey, and furthermore, compare cancer patients and survivors to other groups like the chronically ill and those unaffected by cancer. Importantly, we also assessed under-researched groups heavily impacted by cancer, including informal carers, such as family and friends, and cancer health professionals.

In 2014, Dr Whitford and Professor Olver began attending Australian and International scientific conferences, to share the preliminary outcomes of the project. Below is a lay summary of the preliminary outcomes presented throughout 2014. In 2015, we will continue to present further outcomes at scientific conferences and we will begin publishing major results in scientific journals. As these new and updated outcomes become available, we will update the summaries provided on this webpage including a list of references for those wanting access to the original journal articles. All participants of the study who requested results will receive an email whenever this page is updated.

On behalf of Cancer Council Australia, we would like to sincerely thank all of the individuals who gave their time to provide us with their personal thoughts, feelings, and experiences to make this unique project a great success (we appreciated every one of your generous and kind comments). We would also like to thank all of the organisations that supported this project over the last 2 ½ years to help us recruit such an impressive number of participants. If you would like any further information about The 20/20 Vision for Cancer Project, or to update your contact email, please feel free to contact Dr Hayley Whitford at hayley.whitford@adelaide.edu.au


Lay Summary of Preliminary Outcomes

Background

On Daffodil Day 2012, Cancer Council Australia released The 20/20 Vision for Cancer Project led by researchers Dr Hayley Whitford (Behavioural Research Officer) and Prof Ian Olver (CEO). This world-first online survey aimed to further our understanding of how existential or spiritual wellbeing affects the quality of life of those affected by cancer.

This study builds on more than a decade of research on hope and spiritual wellbeing in our team and is unique in several ways. In essence, we aimed to better understand how spiritual wellbeing is best assessed and which aspects positively impact quality of life when facing chronic illness. In other words, we had two broad aims; improving measurement and understanding the clinical importance of this measurement.

We aimed to look more deeply into the original underlying domains of spiritual wellbeing including peace, meaning, and faith but also the less acknowledged aspects such as love, connectedness, gratitude, forgiveness, hope, appreciation, and compassion. We further aimed to see how each of these spiritual wellbeing domains impacted people’s resilience by assessing depression, anxiety, and stress. Importantly, we wanted to compare the experiences of cancer patients and survivors at different stages of the cancer journey to understand those most in need of support. Furthermore, we aimed to compare those with cancer with their informal carers (family and friends), professionals cancer carers, those with other forms of chronic illness, and people from the community with no experience of cancer, to uncover the degree of differences and similarities in quality of life.

Finally, we aimed to collect additional information from participants about six months later through a shorter but similar online survey to see if quality of life and spiritual wellbeing remained stable over time, or what kinds of life events impacted change.

Below are two basic summaries of our findings so far (mainly for cancer patients and survivors investigated as one group). Summaries are separated into clinical outcomes for those interested in the degree to which spiritual wellbeing domains impact quality of life, and measurement outcomes for those interested in how we best assess concepts as complex as ‘spiritual wellbeing’. Some of you may want to skip the measurement section, so we have added it last. At the conclusion, we have provided a list of scientific presentations and publications that have been accepted based on The 20/20 Vision for Cancer Project to date… we will advise you when more outcomes are released.

Clinical Outcomes

Background and Our Previous Findings of 'Clinical Usefulness'

Back in 1999, Marianne Brady and her team published an important article about the need to assess spiritual wellbeing to accurately calculate a person’s quality of life. In this article, these authors assessed the ‘clinical utility’ of spiritual wellbeing assessment. In other words, they attempted to see if the different aspects of spiritual wellbeing were important to patients. Given this was the first article to present findings based on a new measure known as the Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being; The 12-item Spiritual Well-Being Scale or the FACIT-Sp-12 for short, these authors only assessed two underlying domains or subscales that were understood at the time. These included ‘Faith’ and ‘Meaning/Peace’ which was a combination of ‘Peace’ and ‘Meaning’ - subscales that went on to be further separated into unique subscales as research advanced (see the next section on measurement outcomes for a better understanding of this background). Thus, comparison between this older research and more recent research can be challenging.

In brief, Brady and colleagues found that a greater number of their patients (who were a mix of patients with cancer or HIV) who reported high levels of spiritual wellbeing (both Faith and Meaning/Peace), reported high life enjoyment despite whether chronic symptoms were present or not. These finding highlighted that elevated levels of spiritual wellbeing domains did impact patients in a positive way, providing support for the clinical usefulness of assessing this aspect of wellbeing.

In a study that we published in 2012 that attempted to replicate Brady and her team’s research, including the clinical usefulness of assessing spiritual wellbeing, we found some different outcomes. In this more recent study we concentrated on the new breakdown of the FACIT-Sp-12 looking at three subscales; Peace, Meaning, and Faith. Results for our study indicated that for our Australian patients newly diagnosed with cancer, reporting low or high levels of Faith showed no differing impact on patients’ life enjoyment. Alternatively, those reporting high life enjoyment, also reported high levels of Meaning but because none of these patients reported low Meaning, we couldn’t compare levels. However, we did note that this was an interesting outcome in itself, as those enjoying life to the fullest all reported elevated meaning and purpose in life, despite suffering chronic symptoms. Finally, we did note some similar findings to Brady and colleagues for the domain of Peace; those reporting high levels of Peace appeared to be enjoying their lives to fullest despite suffering chronic symptoms of pain and fatigue. This outcome was only in partial support of the findings reported by Brady and her team, as our results were not mirrored for other group combinations. For instance, the group reporting high levels of Peace but no symptoms did not report high life enjoyment (suggesting elevated peace doesn’t always mean life is enjoyable) and the group reporting low levels of Peace did not show the opposite effect; specifically, they were not enjoying their lives when no symptoms were present.

This was a complex result to understand as it pointed to the possibility that peace may not become elevated unless something negative happens and needs to be reconciled or accepted. It did appear as if those that were suffering reported high levels of peace and were making the most of their lives, like the suffering was a wakeup call, a reminder not to take life for granted, a reminder to concentrate one’s energy on remaining balanced. This is in line with definitions of making peace; it represents reconciliation between two alternate states, such as negative and positive. We presented many alternative explanations for this outcome, most based on the fact that our sample of Australian patients differed in many ways from the mixed culture patients from the American sample in the Brady and colleagues study. Notably, our Australian population is less religious than the American population, thus differences in assessments of faith are always likely to occur. To better understand our findings, we needed to replicate this result in a larger sample. Replication of findings in research, especially using better designs, is an important and valuable way to show outcomes are not just due to chance; this was partly why we conducted The 20/20 Vision for Cancer Project.

Preliminary Findings from The 20/20 Vision for Cancer Project

Although we did administer a 23-item, expanded measure of the spiritual wellbeing measure discussed above as part of The 20/20 Vision for Cancer Project, given the longer version includes the original 12-items from the smaller FACIT-Sp-12, we first looked at the clinical usefulness of the original subscales (Peace, Meaning, and Faith). This allows some comparison between this present research and the studies discussed above and permits us to attempt replication of previous findings in a larger group of cancer survivors at different stages of the cancer journey, allowing greater generalisation to other populations. We also extended this research by assessing the chronic symptoms previously assessed (fatigue and pain) but we also assessed nausea; another prominent symptom in cancer.

As in our 2012 publication, we found the same result for Peace even with the additional analysis for nausea. Specifically, those reporting high levels of Peace were found to report high life enjoyment despite suffering chronic symptoms of fatigue, pain, and nausea. Once again, this outcome was only noted for the high Peace/high symptom groups and not mirrored in other group combinations (such as high Peace/low symptoms or low Peace/high symptoms, etc.).

Perhaps given the smaller sample size in our previous 2012 publication, we were not able to assess low versus high Meaning groups, as no patients reported low Meaning. However, we did find a larger score distribution for the present study given the larger sample of cancer survivors (although very low Meaning was not reported by anyone who enjoyed their lives very much). Results indicated a similar pattern of results as outlined for Peace (above). Specifically, those reporting high levels of Meaning were found to report high life enjoyment despite suffering chronic symptoms. Again, this finding was only evident for the high Meaning/high symptom groups and was not replicated in other group combinations. This makes sense given Peace and Meaning have been found to be very highly associated with each other, suggesting they assess related concepts.

Finally, as published in our 2012 article, we did not find any significant difference in life enjoyment between the low and high Faith groups, suggesting no clinical usefulness in assessing Faith alone. Instead, Peace seems to show the strongest outcomes, followed closely by Meaning.

These findings, taken together, reliably suggest that only cancer patients and survivors suffering chronic symptoms and elevated ‘peace’ or ‘meaning’ enjoy their lives to the fullest. Life does NOT appear ultimately enjoyable unless symptoms AND high peace and/or meaning are evident, suggesting suffering may be necessary to achieve ultimate spiritual wellbeing and overall QOL. These outcomes highlight the clinical usefulness of assessing spiritual wellbeing domains in cancer patients and survivors.

The next step in further extending our knowledge about the clinical usefulness of spiritual wellbeing assessment will be to further replicate and extend these findings using the newly defined subscale structure of the 23-item, expanded version of the spiritual wellbeing scale (outlined in the next section). We will also begin comparisons between groups across spiritual wellbeing domains and quality of life subscales to determine any differences or similarities between cancer survivors, their informal carers, cancer health professionals, those with other chronic illnesses, and those from the general population with no experience of cancer.

Measurement Outcomes

Background and Our Previous Findings on Measurement

As outlined above, in 1999, Marianne Brady and her team were the first to publish an article about the importance of measuring a chronically ill person’s spiritual wellbeing to accurately assess their quality of life. Lots of research had already shown that when we want to assess someone’s general quality of life, we usually look at four core domains. For instance, we assess a person’s physical wellbeing such as whether they feel pain or fatigue, as well as their functional wellbeing, for instance, can they still do the things they enjoy or need to do. In addition, we also look at their emotional wellbeing like how sad they may feel, and finally, their social or family wellbeing like whether they feel supported by their loved ones. Brady and her team showed us that a person’s spiritual wellbeing was just as unique and important as these other areas. Without knowing about the spiritual part of someone’s life, we could not truly understand their quality of life.

Around 2003, our team set out to see if we could replicate and extend these original findings in an Australian sample of patients newly diagnosed with cancer. In research, it is very important to be able to replicate outcomes to show they are reliable and not found only by chance. We used the same measure that Brady and her team used (a measure created by Peterman and colleagues from the same team). This measure is known as the Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being; The 12-item Spiritual Well-Being Scale or the FACIT-Sp-12 for short. It assesses spiritual wellbeing by getting people to disagree or agree with 12 statements that have no reference to specific religious beliefs or practices (such as ‘God’ or ‘church’ or ‘Synagogue’). This means that people who classify themselves as ‘spiritual’ and not ‘religious’ could easily respond, and so could those who came from different religious faiths. Although it is difficult to define ‘spiritual wellbeing’, this measure allows people to make up their own mind about what it means to them; this is a common practice when assessing something complex with multiple meanings (this is referred to as a phenomenological measure).

What we do understand about the 12 statements that appear to capture the essence of spiritual wellbeing, is that they were carefully chosen from a much larger set of statements suggested by cancer patients, psychotherapists, and religious and spiritual experts (like hospital chaplains), from different cultures, across different areas in the United States of America. Other researchers that have tested the scale in other very large studies with cancer survivors have found these 12-items can be further broken down into smaller domains or subscales that appear to successfully assess ‘peace’, ‘meaning’ or purpose in life, and ‘faith’ or organised religious practices and beliefs.

Just like the initial study by Brady and colleagues, our initial studies published in 2008 and 2012 also found that measuring spiritual wellbeing added something unique and novel to the assessment of a person’s quality of life, highlighting that spiritual wellbeing was not just another way to measure someone’s emotional wellbeing as previously argued. We found that all three subscales (Peace, Meaning, and Faith) added something unique to the assessment of quality of life.

Preliminary Findings from The 20/20 Vision for Cancer Project

To replicate and extend on previous studies about the measurement of spiritual wellbeing, for the current project, we chose to include the lesser known Functional Assessment of Chronic Illness Therapy – Spiritual Wellbeing, Expanded or FACIT-Sp-Ex for short. This measure includes the original 12-items from the FACIT-Sp-12 discussed above that appears to assess three important underlying domains (Peace, Meaning, and Faith), but it also includes another 11-items about love, connectedness, gratitude, forgiveness, hope, appreciation, and compassion. Only Cotton and colleagues, as part of a conference poster, have attempted to breakdown this expanded measure to see what underlying domains it may contain (this statistical technique called ‘factor analysis’ is used to see if single statements or items on the scale group together to reliably measure smaller subscales such as ‘peace’ from the 12-item measure).

To look into the structure of this expanded 23-item measure, we took the responses from all cancer patients and survivors that had responded to our online survey at the time (1,045 participants), and used a statistical technique (called ‘principal components analysis’) to see how the individual items grouped together. Our analyses were very successful for two reasons. Sometimes these kinds of analyses can’t find a place to ‘fit’ all items in a measure, but we were lucky to find a very successful fit for all 23-items. In addition, it is very difficult to find the same kinds of subscales or groupings that other researchers have published, but again, we were successful at replicating the same three basic domains of Peace, Meaning, and Faith previously found by others. But given we had 23-items (and not just the original 12-items), we were able to extend our findings. This is what we found:

  • Peace: the original 4-items or statements that created this subscale were again found to group together in a reliable way, even when we analysed the expanded 23-item measure of spiritual wellbeing (statements such as ‘I feel peaceful’).
  • Meaning: the original 4-items or statements that made up this subscale from the smaller 12-item measure (statements such as ‘I feel a sense of purpose in my life’), all stayed grouped together. However, 3 new items from the expanded section of the larger scale were also added to the group. These included items about giving and receiving love, and feeling connected with others. This strengthens what we already know about ‘meaning’; relationships with significant others appear to give us great meaning in life, and so do relationships with other aspects of life (like pets, nature, literature, music, transcendent beings, etc.).
  • Faith: the original 4-items or statements that created this subscale were again found to group together. However, 1 new item from the expanded measure also grouped to form this subscale (this item is the only one in the scale to mention anything related to religion; ‘I feel connected to a higher power [or God]’). This makes sense as ‘faith’ is suggested to be a measure of organised religious practices and beliefs.
  • Positive Interaction: given 7-items still remained after grouping the original three subscales above and expanding two of them (Meaning and Faith were now larger subscales), we found that the remaining items or statements neatly grouped together to create a fourth reliable subscale. These 7-items were about forgiveness (toward others and oneself), gratitude (for others and one’s own life), hope, appreciation for the world, and compassion for others. We therefore called this subscale ‘Positive Interaction’ as it combines positive statements about different kinds of interactions (those with others, self, past, future, present, and the external world).

In summary, we were able to replicate and extend previous research by finding a successful breakdown of the expanded spiritual wellbeing scale (FACIT-Sp-Ex). We identified the original three domains of Peace, Meaning, and Faith, but we identified that the measurement of Meaning and Faith could be extended with the addition of new meaningful items. Furthermore, we identified a new reliable subscale that we called Positive Interaction. This expanded 23-item measure was also found to be a more reliable (better) measure of spiritual wellbeing than the original 12-item version. The FACIT-Sp-Ex tapped into the concept of spiritual wellbeing to a greater degree.

The next stage of this ‘psychometric’ area of research (looking at the successful measurement of spiritual wellbeing) will set out to replicate this same breakdown of the FACIT-Sp-Ex, using a different kind of analysis to see if we can support these findings again. We will also test the validity of these four subscales (are they measuring what we think they are measuring?). We do this by comparing the subscales to other well-known measures to see how similar they are.

20/20 vision for cancer project

Preliminary Scientific Conference Presentations

Whitford, H. S., & Olver, I. N. (2014). The clinical and research implications of peace as part of spiritual wellbeing assessment in quality of life in cancer. Rapid fire presentation to be presented at the 2014 UICC World Cancer Congress, Melbourne, Australia, 3-6 December.

Whitford, H. S., & Olver, I. N. (2014). Convergent validity of the newly proposed four-component structure of the Functional Assessment of Chronic Illness – Spiritual Well-Being, Expanded. Poster to be presented at the 16th World Congress of Psycho-oncology (IPOS), Lisbon, Portugal, 20-24 October.

Whitford, H. S., Jones, S. B. W., & Olver, I. N. (2014). Psychometric properties of the Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being, Expanded. Oral presentation to be given at the 21st International Society for Quality of Life Research (ISOQOL) Annual Conference, Berlin, Germany, 15-18 October.

Olver, I. N., & Whitford, H. S. (2014). The importance of spiritual wellbeing domains in quality of life assessment: replicating and extending evidence of clinical utility. Poster presentation at the Medical Oncology Group of Australia (MOGA) 2014 Annual Scientific Meeting, Sydney, Australia, 6-8 August.

Olver, I. N., & Whitford, H. W. (2014). Investigating the clinical relevance of spiritual wellbeing domains in quality of life assessment. Poster presentation at the International Symposium on Supportive Care in Cancer (MASCC/ISOO), Miami, USA, 26-28 June.

Olver, I. N., & Whitford, H. W. (2014). Spiritual wellbeing’s clinical utility in quality of life assessment. E-reference published for the American Society of Clinical Oncology (ASCO) 50th Annual Meeting: Science and Society, Chicago, USA, 30 May-3 June.



This page was last updated on: Thursday, June 9, 2016

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