Empowering Patients With Information and Coordinated Care

M. Tish Knobf, PhD, RN, FAAN, AOCN

Oncology nurses have a crucial role to play in managing symptoms and improving overall outcomes for patients with cancer, and central to this effort is an understanding that receiving the right information—at the right time—empowers patients throughout their cancer trajectory, M. Tish Knobf, PhD, RN, FAAN, AOCN, professor at the Yale University School of Nursing, told attendees at the ONS Connections: Advancing Care Through Science conference.

Knobf, the recipient of the society’s 2012 Trish Greene Quality-of-Life Lectureship Award, has conducted extensive research in the areas of symptom distress and quality of life in women with breast cancer over her three decades in clinical practice. In her remarks, she stressed that patient information and treatment recommendations must be coordinated, targeted to the individual patient’s needs, and grounded in evidence of effectiveness.

As diagnostic tools and therapies have become more sophisticated and their side-effect profiles more complex, the information needs of patients have also increased, said Knobf. When patients and their families are armed with enough information and support, however, they will experience less stress, be better positioned to engage in self-care, and improve their adherence to treatment regimens.

Focusing

Building on her 2002 study of premature menopause among women with early-stage breast cancer¹ and a subsequent literature review, Knobf described for her audience four stages in a “carrying on” process for newly diagnosed cancer patients receiving curative-intent therapy. She also demonstrated how targeted and coordinated nurse interventions benefit patients during each stage of the process.Focusing occurs beginning and during therapy, explained Knobf, noting that patients often first experience a crisis response, feeling overwhelmed with medical information, and thus less likely to deal cognitively with the experience.

Dealing With Uncertainty

At this stage, patients know that they must “do what they have to do,” to get through their treatment—a process which has been described by patients as “being on a treadmill” or on “automatic pilot”—and it is also one that can prove socially isolating,² with patients reporting having to sacrifice social and outside activities because of such factors as fatigue and the need to balance treatment with employment and family responsibilities.Uncertainty occurs during treatment, but also throughout the cancer trajectory, continuing into survivorship, explained Knobf. Once again, patients need information they can understand and digest— jargon should be avoided. She said that in practice, for example, this means describing in concrete ways what radiation therapy will involve³ or explaining terms like infusion and cognitive changes.

As one patient reported, “I was told to expect cognitive changes, but I didn’t know what that meant.”⁴ However, more is not necessarily better, she said, and nurses should consider breaking the information up into pieces, and some information, like tips on fatigue, will need to be shared repeatedly over time. “We have to keep remembering how brand new this is for patients when they’re starting treatment.”

Knobf described data analysis5 she conducted, which showed a relationship between symptom distress, being prepared, uncertainty, and outcomes (Table). “Making the best of it” represents the bell curve, where the majority of patients were well-informed, had mild-to-moderate symptom distress, and a fair amount of support, she said. “These patients could integrate the experience and move on.”

The group we need to worry about, she continued, is the “struggling” group. These women had high-to-moderate symptom distress, they did not feel they were adequately prepared, and they had a lot of uncertainty and emotional distress.

Nursing research can be very helpful here, for example, studying patient profiles to see what symptoms are most common, when they might peak, and noting those that may persist when treatment ends, Knobf explained. Nurses can then use this information to reinforce teaching at the appropriate times.

Table. Relationship of Symptom Distress, Being Prepared, Uncertainty, and Outcomes

Type of Behavioral Response

Factors

Struggling

Making the Best of It

Barely Noticing

Symtom Distress

High-Moderate

Moderate-Mild

Mild-None

Information Preparation

Not Prepared

Somewhat

Prepared

Uncertainty

High

High-Moderate

Little

Perceived Control

Little-None

Somewhat-Full

Somewhat-Full

Life Disruption

Yes

Manageable

Minimal-None

Perceived Support

Little-None

Somewhat-A lot

A lot

Emotional Distress

High

Moderate

Low

Developing Awareness

This phase occurs immediately after treatment ends, as patients take in the scope of their cancer and the side effects of therapy. Behaviors associated with this stage include exploring meaning (eg, reflecting on what just happened, now that the patient is “off the treadmill” of treatment), self-managing persistent symptoms, and further integrating the experience into daily life.

“There is a lot of research that shows that the period of ‘high vulnerability’ occurs in the first 3 to 6 months after treatment ends,” said Knobf. She added that patients also are often surprised that they continue to have symptoms, such as hot flashes and chemotherapy-induced neuropathy.^5,6

Knobf believes integration of the cancer experience presents one of the biggest challenges for a survivor when treatment finishes. Many patients have to cope with sexuality and body image changes, they feel isolated and alone when treatment ends, and they find families and friends start decreasing their support. Nurses should also be sensitive to possible differences in patient experiences and side effects across different cultures. The literature reveals other tensions, she added: “A lot of breast cancer survivors don’t want to wear pink ribbons, they don’t want to go to these relays; they think that it is incongruent with their feelings of fear of recurrence and uncertainty and the vulnerability that the cancer might come back.”

Balancing

Ultimately, she continued, patients need to make the transition and establish new priorities, find positive meaning, and not let the experience become the dominant aspect of their lives. As with the previous two stages, symptom assessment and providing information to the patient is critical during the awareness stage. Knobf recommends conducting a transition information session before scheduling the 3-month follow-up visit. This session should include identification of a key provider that patients can call for information—a top priority for patients, research shows. Nurses also should consider whether their facilities have an infrastructure equipped to implement survivorship care plans, and assist in finding effective ways to provide patients with needed information and support.The last and final stage encompasses balancing, and this occurs approximately 1-2 years after treatment ends, according to Knobf. The behaviors that have been identified for this stage include being wary, keeping healthy, struggling with the system, and finding support.

“This is really the transition to survivorship.”

Patients want to weigh the risks and benefits of recommended treatments to prevent recurrence of their cancer and also minimize the risk of comorbid health conditions. “Many patients have described being ‘medication-averse,’” she added, and some patients don’t want to take more medication after chemotherapy. “This isn’t universal with every survivor, but it is something we need to attend to.”

A recalibration, whereby patients decide to make themselves a priority, is also important, she added, noting that “one of the women who joined my exercise intervention studies told me that this is the first time she thought about doing something for herself”—a common refrain among survivors.

During this balancing phase, patients often struggle with aspects of the healthcare system, such as a lack of coordination among providers, there being no one provider to manage their care, follow-up oncology visits that remain mainly focused on surveillance of recurrence, and a lack of attention to risk reduction. Roundtree and colleagues7 described this as “feeling in limbo” in the healthcare system. Survivors still perceive that there is not a single provider managing their healthcare, and “this is their biggest complaint,” Knobf emphasized.

“Oncologists and oncology nurses, by and large, are trained to ‘manage’ the patient—the oncologist to manage the disease, the nurse to manage the patient, the family, and the symptoms. Most of us who have not recently graduated did not get a lot of content on health promotion and risk reduction, which tended to be content in primary care programs, but it’s clearly a huge need for patients who are survivors, said Knobf.”

She also noted the “need for providers to have evidence-based knowledge to manage specific symptoms,” so that those approaches with demonstrated effectiveness are used.

“Oncology nurses are really the leaders in being able to take evidence-based symptom management data and translate it into practice and help educate some of our physicians who focus on evidence-based disease management. It’s a wonderful partnership opportunity.”

Finally, survivors want to reduce their risk of recurrence and chronic illness, with many facing persistent physical symptoms and emotional distress. They need support to implement healthy lifestyle changes and reduce stress, for example, but may find this difficult, again due to a lack of consistent information and communication among providers.

Future Directions

She said that particularly in this balancing phase, adoption of healthy lifestyle behaviors is critical. “For those cancers where we have improved survival and decreased mortality, patients are dying of other chronic illnesses. Breast cancer survivors now have a higher mortality from cardiovascular disease than they do from breast cancer mortality.”Across the cancer trajectory, nurses can influence all of the desired outcomes (Box) that they hope to achieve for their patients, said Knobf. To deliver to patients the kind of information and support they need, Knobf recommends deploying solid evidence derived from nursing research. “We can learn a tremendous amount from what we have in our literature already.”

“Carrying On: Desired Outcomes for Patients”

Improved coping

Satisfaction with information

Decreased uncertainty

Improved confidence in self-care

Effective symptom management

Identification of support resources

Patient-centered coordinated care

Adoption of healthy lifestyle behaviors

Some examples include using technology in the clinical setting to engage patients in care, identifying patient preferences, targeting information, and achieving goals for patient-centered care. Implementing proven interventions to decrease uncertainty is also important, she said, because, “uncertainty is pervasive” throughout the cancer trajectory. Exercise promotion is also crucial. Knobf noted research demonstrating a significant positive effect of exercise on the quality of life of patients across many tumor types.⁸

Knobf challenged nurses also to “think out of the box” to improve delivery of information and support to their patients.

“We’re in a changing healthcare environment. It’s no longer just about standards, but outcomes, and payers and agencies and institutions are going to be holding our feet to the fire to look at quality indicators,” she stressed, noting that nurses have a crucial role to play in developing these metrics. In fact, a primary emphasis for nurses across all four stages, Knobf said, should be “symptom assessment and documentation. If it’s not in the record, nobody is going to be able to do an audit on that quality indicator to say that you did what you were supposed to do to match that standard.”

References

1. Knobf MT. Carrying on: the experience of premature menopause in women with early stage breast cancer. Nurs Res. 2002;51(1):9-17.
2. Browall M, Gaston-Johansson F, Danielson E. Postmenopausal women with breast cancer: their experiences of the chemotherapy treatment period. Cancer Nurs. 2006;29(1):34-42.
3. Halkett GK, Kristjanson LJ, Lobb E, O’Driscoll C, Taylor M, Spry N. Meeting breast cancer patients’ information needs during radiotherapy: what can we do to improve the information and support that is currently provided? Eur J Cancer Care. 2009;19(4):538-547.
4. Myers JS. Chemotherapy-related cognitive impairment: the breast cancer experience. Oncol Nurs Forum. 2012;39(1):E31-E40.
5. Knobf MT. “Coming to grips” with chemotherapy-induced premature menopause. Health Care Women Int. 2008;29(4):384-399.
6. Bakitas MA. Background noise: the experience of chemotherapy-induced peripheral neuropathy. Nurs Res. 2007;56(5):323-331.
7. Roundtree AK, Giordano SH, Price A, Suarez-Almazor ME. Problems in transition and quality of care: perspectives of breast cancer survivors. Support Care Cancer. 2011;19(12):1921-1929.
8. Ferrer RA, Huedo-Medina TB, Johnson BT, Ryan S, Pescatello LS. Exercise interventions for cancer survivors: a meta-analysis of quality of life outcomes. Ann Behav Med. 2011;41(1):32-47.